Speaker 1: Family Secrets is a production of iHeartRadio.
Speaker 2: I see that girl with her cow licks and her
Speaker 2: sleepy eyes, trying so hard to be the peppy, energetic,
Speaker 2: playful kid everyone wanted her to be, and I imagine
Speaker 2: taking her in my arms like some romance hero and saying,
Speaker 2: you are not broken. There is a better, more beautiful
Speaker 2: word for what you are.
Speaker 1: That's Marianne Chambari, Portland, Oregon based essayist and author of
Speaker 1: the recent memoir A Little Less Broken. Marianne's is a
Speaker 1: story of a very particular kind of secret, the kind
Speaker 1: so hidden that it seems possible that it doesn't exist
Speaker 1: at all, and yet shapes the course of an entire life,
Speaker 1: until finally it is named. I'm Danny Shapiro, and this
Speaker 1: is Family Secrets. The secrets that are kept from us,
Speaker 1: the secrets we keep from others, and the secrets we
Speaker 1: keep from ourselves. Tell me about the landscape of your
Speaker 1: childhood in Old Greenwich, Connecticut.
Speaker 2: I think when I look back, it honestly feels almost
Speaker 2: like I'm watching the movie of my childhood. We had
Speaker 2: this house that butted up against the woods, and I
Speaker 2: spent a lot of my childhood running through those woods.
Speaker 2: Make little soup out of wild onions. And it wasn't
Speaker 2: really until I was an adult that I looked back
Speaker 2: at a lot of those kind of idyllic memories and
Speaker 2: saw them for what they were, which for the most
Speaker 2: part was me trying to hide from people and me
Speaker 2: feeling like I was not like everybody else. I did
Speaker 2: not want to be around my family, as loving and
Speaker 2: wonderful as they are. I am the only girl, and
Speaker 2: I have three younger brothers, and there's my parents.
Speaker 1: So it was a.
Speaker 2: Big, very bustling house right near downtown Old Greenwage, and
Speaker 2: I describe it as the Weasley House from Harry Potter.
Speaker 2: It was like tilting to one side as my parents
Speaker 2: built up. Our house was a shack compared to the
Speaker 2: rest of the houses in Greenwich. I was very serious
Speaker 2: compared to my siblings who were always yelling and having
Speaker 2: nerf fights and playing video games, and I was quiet
Speaker 2: and reading all the time and wanting to escape into
Speaker 2: the woods. And so most of my childhood actually feels
Speaker 2: like there's two sides of it. There's the movie that
Speaker 2: I'm watching, the very pleasant ville idyllic suburban American childhood,
Speaker 2: and then there was the interior of what was happening
Speaker 2: within me, which was that I hated myself most of
Speaker 2: the time and I felt separate from the rest of
Speaker 2: my family. My dad was a journalist. We moved to
Speaker 2: Connecticut when I was five or six. He got a
Speaker 2: job at the New York Times, so it was his
Speaker 2: absolute dream job. I think he was the editor of
Speaker 2: the Connecticut section for a while before it no longer existed.
Speaker 2: He wrote a column called family Man, where he wrote
Speaker 2: about being a dad and about me and my siblings.
Speaker 2: And I found a note. So my dad is a
Speaker 2: bit of a paper hoarder. And they recently sold the
Speaker 2: house in Connecticut to move out to Oregon, and my
Speaker 2: dad gave me boxes of old papers that he's kept
Speaker 2: over the years, and I was going through them literally
Speaker 2: just two days ago, and I found this little scrap
Speaker 2: of paper where he had been transcribing the conversations that
Speaker 2: I was having with my friends at my third grade
Speaker 2: birthday party. And he saved that transcription, so it says
Speaker 2: I have a crush on Cory. Don't tell anyone. I
Speaker 2: would be so embarrassed if anyone knew. And I very
Speaker 2: vividly remember a week after that birthday, his family man
Speaker 2: column was about my third grade slumber party and all
Speaker 2: the boys we had a crush on, And all my
Speaker 2: friends came to school the next day and were livid
Speaker 2: with me and livid at my dad because their parents
Speaker 2: had told them. Oh, Marian's dad wrote an article in
Speaker 2: such and such a newspaper about all the crushes you have.
Speaker 2: And I already did not have very many friends. But
Speaker 2: that was really that killed any chance I had of
Speaker 2: having any sort of like real intimate relationships with girls
Speaker 2: in elementary school especially. So yes, my dad was a
Speaker 2: journalist but it came with some very serious downsides for
Speaker 2: a while.
Speaker 1: So he named names.
Speaker 2: Yeah, he named names. You didn't even change them, like
Speaker 2: he wasn't he was not thinking. So old greenwage is.
Speaker 2: I describe it as the love child between Norman Rockwell
Speaker 2: and a boat shoe. All of my friends had sail boats,
Speaker 2: and they belonged to a beach club. But it's the
Speaker 2: type of wealthy that you wouldn't necessarily know it by
Speaker 2: looking at someone. And everyone always wore the same clothes,
Speaker 2: right they're wearing their Nantucket reds. When I was in
Speaker 2: middle school, I think everyone started wearing ug boots and
Speaker 2: I was devastated to not have a pair of ug boots. So,
Speaker 2: by its very nature was very exclusive. You were on
Speaker 2: the outside if you didn't have the right clothing or
Speaker 2: live in the right house. Even from an extremely young age,
Speaker 2: it would be very obvious who was one of us
Speaker 2: and who wasn't, and I obviously was not. My parents
Speaker 2: did not care about ugs. We shopped at DSW and
Speaker 2: my mom is very thrifty and very environmentally conscious before
Speaker 2: it was cool, and so she was always hand washing
Speaker 2: our ziploc bags and hanging them to dry around the house.
Speaker 2: There was always food that had gone off in the fridge,
Speaker 2: for sure. So I was already different in my family
Speaker 2: simply by the nature of my gender, right, I was
Speaker 2: the girl, and then I had these younger boys. I
Speaker 2: was different because my parents were journalists and not hedge
Speaker 2: fund manaitures, and so in Greenwich, if you're not in finance,
Speaker 2: you're poor, right, which is obviously not true. We were
Speaker 2: like very comfortably middle class, but like it felt that
Speaker 2: way growing up. I already had two strikes against me.
Speaker 2: So on top of that, my mom is also Puerto Rican,
Speaker 2: so then there's this racial element as well. I loved
Speaker 2: talking about Puerto Rico. Growing up, I learned Spanish and
Speaker 2: English at the same time. I would wear my abuillos guayabra,
Speaker 2: which is this like very typical kind of Puerto Rican
Speaker 2: and Cuban white button down shirt, and I would wear
Speaker 2: it to school. I would bring mpanadas to school, So
Speaker 2: then there's the kind of racial difference. And then on
Speaker 2: top of all of that, I was quote unquote weird.
Speaker 2: I talk a lot. I have no filter, and so
Speaker 2: I would often just say the thing that I was
Speaker 2: feeling in any given moment. There was this kid. He
Speaker 2: was very rich, and everyone called him rich bitch behind
Speaker 2: his back. That was his nickname, which is so silly
Speaker 2: because it's Greenwich, Connecticut and everybody was rich, but he
Speaker 2: was richer than all the other rich kids, and I
Speaker 2: did not realize that I couldn't just call him rich
Speaker 2: bitch to his face, and so I did, which is
Speaker 2: when the vice principal took me to her office and
Speaker 2: said that I was the worst kid in fourth grade.
Speaker 2: And it's so bonkers to me now because I did
Speaker 2: not feel bad. I got good grades, I was smart,
Speaker 2: I showed up on time. I was not the one
Speaker 2: inventing the nickname rich Bitch. I was not the one
Speaker 2: throwing kickballs at people's heads at recess. I was not
Speaker 2: one of the bitchy popular girls who was constantly mean
Speaker 2: behind other kids' backs. I wasn't passing shitty notes. But
Speaker 2: because I didn't have a filter and I couldn't pretend
Speaker 2: to be someone I wasn't in the way that a
Speaker 2: lot of the kids could, it was immediately obvious to
Speaker 2: people that I was different, and different was bad. I
Speaker 2: didn't remember this until recently, but I didn't have a
Speaker 2: lot of control over my body in the same way
Speaker 2: that other kids did. So a very easy example is
Speaker 2: said I was terrible at sports, right, not a huge deal.
Speaker 2: Lots of people are terrible at sports. I would be
Speaker 2: the one in the far far outfield picking dantellions or whatever.
Speaker 2: But I also had constant pea accidents all the way
Speaker 2: until I was in middle school. Actually, I remember in
Speaker 2: first or second grade meeting my next door neighbors for
Speaker 2: the first time, and they were so funny. Oh my god,
Speaker 2: I was obsessed with them right away, and they were
Speaker 2: talking and joking to me, and I was just laughing
Speaker 2: so hard and completely not conscious of the fact that
Speaker 2: I needed to pee, and I just completely wet myself
Speaker 2: in front of these like very cool, funny kids. I
Speaker 2: was probably in second grade, so let's say I was
Speaker 2: eight years old, but that would continue, right. It happened
Speaker 2: in class. It happened probably in third or fourth grade
Speaker 2: at a friend's house. Same thing. It felt like my
Speaker 2: body and my brain were constantly divided, and I wasn't
Speaker 2: often aware of what was happening to my body until
Speaker 2: it was too late, And most of the time it
Speaker 2: involved peeing on the floor of my friend's houses up
Speaker 2: until I was thirteen. So the most recent memory I
Speaker 2: was thirteen or fourteen. I was trick or treating, you know,
Speaker 2: it's that year when everyone tells you you're too old
Speaker 2: to trick or treat, but you go anyway. And we
Speaker 2: were like knocking on someone's door, and as soon as
Speaker 2: she opened, it occurred to me, Oh my god, I
Speaker 2: have to pee so bad, And I was like, can
Speaker 2: I use your bathroom? And I sprinted past her into
Speaker 2: her bathroom, peed all over her bathroom floor, and then
Speaker 2: just left it there. God, it's so embarrassing in eindsight,
Speaker 2: but really I didn't even remember that these things had happened.
Speaker 2: Until the past couple of years. Really well, that.
Speaker 1: Makes so much sense because it seems to me correct
Speaker 1: me if I'm wrong, But there's this kind of like
Speaker 1: disc connect between interior and exterior, between body and brain,
Speaker 1: between brain and environment that like the way that you
Speaker 1: describe it, and this profound sort of excess of stimulation.
Speaker 1: I mean, one of the things that struck me that
Speaker 1: you wrote about is there's some really wonderful sprinkling through
Speaker 1: of theory In your book and The Invisible World's theory
Speaker 1: of autism, the researchers Kamela and Henry Markram suggest that
Speaker 1: autism isn't just a differently wired brain, but a brain
Speaker 1: with more wiring in other words, supercharged. And so it
Speaker 1: feels like with that supercharged brain, I can imagine that
Speaker 1: it would disconnect from just the oh I need to
Speaker 1: pee in advance.
Speaker 2: I had really never thought about it that way. That
Speaker 2: is an extremely articulate explanation of what I think is happening. Yeah,
Speaker 2: I think I think that's exactly it. The example I
Speaker 2: always use is just when I'm working from home, right,
Speaker 2: I'm in my office, I'm trying to write and a
Speaker 2: car slashes by outside and my next door neighbor is
Speaker 2: hammering at his roof again for the millionth time, and
Speaker 2: there's a dog barking across the street, and my husband's
Speaker 2: chair is squeaking upstairs, and my cat is trying to
Speaker 2: get into the office, and all of those things are
Speaker 2: competing for an equal amount of attention, and it's very
Speaker 2: hard to just focus on one of those things, and
Speaker 2: so what ends up happening is other stuff gets completely forgotten. So,
Speaker 2: for example, my hands and feet will get really numb
Speaker 2: because I haven't moved them, or I'll have to go
Speaker 2: to the bathroom and then not realize until it's an emergency.
Speaker 2: And so I can imagine on Halloween when you're thirteen,
Speaker 2: you're laughing with your friends and you're full of candy
Speaker 2: and you've got a sugar rush and it's freezing cold outside.
Speaker 2: The having to pee is just it's being drowned out
Speaker 2: by the fifty other things that are competing for your attention.
Speaker 2: In today's world, this cluster of behaviors would likely be
Speaker 2: recognized earlier, a diagnosis made along with accommodations. Perhaps now
Speaker 2: a young Marian could grow up truly knowing herself, accepting herself.
Speaker 2: But this is not remotely what happened for Marian. All
Speaker 2: the unknowns were manifesting in her body, her environment, all
Speaker 2: of which were deeply misunderstood by those around her. And
Speaker 2: she misunderstood herself too, of course she did. She had
Speaker 2: no map. It's terrible for people to misunderstand you. It's
Speaker 2: terrible to be told that you're the worst kid in
Speaker 2: fourth grade when you really just thought you were just
Speaker 2: repeating what everyone else was doing. You don't see how
Speaker 2: it's different, right, But the misunderstanding yourself, I really did.
Speaker 2: I just felt like I was insane constantly for decades.
Speaker 2: I did not know that the constant pe accidents, the
Speaker 2: blunt honesty, the knee to retreat to small, dark, quiet places,
Speaker 2: the stimming, that these things were part of a collection
Speaker 2: of conditions that's called autism. And so the stimming is
Speaker 2: a great example. So for a really long time, I
Speaker 2: thought that I had ticks or later turets. That was
Speaker 2: one of my many diagnoses in my twenties was that
Speaker 2: I had tourets because I was very often twitching my face.
Speaker 2: I would blink really hard and then flare my nostrils,
Speaker 2: and I remember the first time someone called me out
Speaker 2: on it was a guy that I had a crush
Speaker 2: on in sixth grade, and he said, why do you
Speaker 2: move your face all weird like that? You look like
Speaker 2: a rabbit. And so there was this very visible indicator
Speaker 2: from very early on that I was different, that there's
Speaker 2: something wrong with me. And again I just internalized that.
Speaker 2: Over the years, I just internalized all the ways that
Speaker 2: I was different, and because I didn't know I was autistic,
Speaker 2: I just thought there was something wrong with me. I
Speaker 2: was broken. I'm weird, I'm twitchy, I'm gross, I'm moody,
Speaker 2: like name fun adjective. And I had hurled that at
Speaker 2: myself constantly.
Speaker 1: Marianne writes, at thirteen, all I knew was what I
Speaker 1: had been told. And there are only so many times
Speaker 1: you can tell a girl she's broken before she starts
Speaker 1: to believe it. This has such a universal ring of truth,
Speaker 1: doesn't it, Because as children, as teenagers, we tend to
Speaker 1: define ourselves by who we're told we are. Marianne's been
Speaker 1: told she's weird and bad, that she's just too much,
Speaker 1: and now she's a teenager, and some of this starts
Speaker 1: manifesting itself as anger. It's a perfect storm. She smashes things,
Speaker 1: breaks things, and also is being broken diagnoses all of
Speaker 1: them wrong are hurled at her too, anger, management problems,
Speaker 1: emotional dysregulation. For now, her bones know, she doesn't have
Speaker 1: the language.
Speaker 2: It's like growing up thinking that you're one race and
Speaker 2: then you're not, or thinking that your parents are your
Speaker 2: biological parents, and then you find out you're adopted. It's
Speaker 2: like this core piece of information, even if no one
Speaker 2: was quote unquote keeping it from you, it's still there,
Speaker 2: you still know it. I think a lot about Sylvia Plath. Actually,
Speaker 2: a writing teacher of mine was explaining that many people
Speaker 2: in Sylvia's family had killed themselves, but nobody told her,
Speaker 2: and so she's feeling the feelings, the depression and the
Speaker 2: suicidal ideation, all of that, but not knowing why. And
Speaker 2: obviously this was ages ago, and I cannot diagnose anyone
Speaker 2: through history. But I just feel like hidden knowledge exists
Speaker 2: in our bodies, and if we're given access to it,
Speaker 2: if we know why we are the way we are, like,
Speaker 2: could it save us? Could it have saved Sylvia to
Speaker 2: know that it wasn't just her, that this ran in
Speaker 2: her family, that this thing that she's feeling is genetic.
Speaker 2: It has nothing to do with her or something that
Speaker 2: she's quote unquote doing or not doing wrong. And I
Speaker 2: think more information is only a good thing.
Speaker 1: We'll be back in a moment with more family secrets.
Speaker 1: Marian goes to college in North Carolina at Davidson and
Speaker 1: it's the first extended time she's been away from her family.
Speaker 1: She travels to the UK for a semester abroad, which,
Speaker 1: when she falls in love with a man named Lewis,
Speaker 1: turns into a much longer period of time overseas once
Speaker 1: she graduates and moves in with him, first to London,
Speaker 1: then to New Zealand, where his family lives.
Speaker 2: So, yeah, I moved in. I'm twenty five years old.
Speaker 2: I have moved across the world with my boyfriend. We
Speaker 2: had this beautiful romantic love story in London, straight out
Speaker 2: of some rom com with Hugh Grant. He even looked
Speaker 2: a little bit like Hugh Grant. And everything was great
Speaker 2: when we're living in London and we're both in this
Speaker 2: city that we love and living in separate apartments. But
Speaker 2: once we were in New Zealand, I'm confronted with so
Speaker 2: many differences. I don't have a job, I'm living with
Speaker 2: his parents, who are the loveliest human beings, but are
Speaker 2: still someone else's parents and you're in their home. I'm
Speaker 2: in a country that I'm completely unfamiliar with, and the
Speaker 2: houses infested with cockroaches, which are my biggest, absolute, biggest fear.
Speaker 2: I became a completely different person from the woman that
Speaker 2: he met in London. I went from fun, loving and
Speaker 2: adventurous and this performance of a sexy American to suddenly
Speaker 2: being afraid all the time. Constantly, I was afraid of
Speaker 2: his parents. I would hide in his room so that
Speaker 2: I wouldn't have to talk to them. I would stay hungry
Speaker 2: and pretend that I didn't want dinner because I just
Speaker 2: couldn't keep up that performance of the fun American girlfriend.
Speaker 2: And the cockroach is the constant. If you've ever had
Speaker 2: a phobia, it's so silly saying it out loud, because
Speaker 2: it's just a bug. But I cannot express the sense
Speaker 2: of fear that I lived in every second of every
Speaker 2: day in that house, like I could not move, I
Speaker 2: couldn't get out of bed or go to the bathroom
Speaker 2: without scouring every single corner and every wall for a cockroach.
Speaker 2: And a lot of the time because there were a
Speaker 2: lot of cockroaches, there would be one, and it felt
Speaker 2: like being electrocuted, and so that took everything out of me.
Speaker 2: And it wasn't until years later that I discovered this
Speaker 2: idea of spoon theory, which was created by a woman
Speaker 2: with lupus I believe, who was explaining to her friend.
Speaker 2: They're having dinner and the friend is trying to understand
Speaker 2: what it's like to live with lupus, and so Christine
Speaker 2: I think is her name, hands a bunch of spoons
Speaker 2: to her friend and says, Okay, these are your spoons
Speaker 2: for the day. Everything you do takes a spoon. You
Speaker 2: want to get up and wash your hair and put
Speaker 2: on makeup and get dressed, that's going to be a spoon.
Speaker 2: You need to commute to work, Oh, but that would
Speaker 2: usually be a spoon, But there's an accident and there's
Speaker 2: a lot of traffic and it takes an hour and
Speaker 2: a half. That's actually going to cost you three spoons.
Speaker 2: By the time you get to work, you're halfway through
Speaker 2: your spoons already. And by the end of the day,
Speaker 2: if you're out of spoons, you cannot feed yourself, you
Speaker 2: can't go to the gym, you can't go out with friends,
Speaker 2: you collapse into bed without brushing your teeth. That's how
Speaker 2: I lived, that's how I continue to live. And so
Speaker 2: living in New Zealand with parents who were not my own,
Speaker 2: who wanted to talk to me all the time, and
Speaker 2: I had to perform and be a good house guest,
Speaker 2: essentially in my own home for six months, followed by
Speaker 2: living with a phobia, it meant that I was completely incapacitated.
Speaker 2: I didn't work, I barely got out of bed, and
Speaker 2: me and the boyfriend lasted six months after I moved
Speaker 2: to New Zealand because I am with a person now
Speaker 2: who deals with that all the time. But you know,
Speaker 2: at twenty five, when you're just learning how to be
Speaker 2: into relationships, that was not something that he was capable
Speaker 2: of handling. And because I didn't understand it, I didn't
Speaker 2: understand that my spoons were being blown by lunchtime, there
Speaker 2: was no way to fix it. And this is what
Speaker 2: I'm talking about, how knowledge of yourself is so much power.
Speaker 2: Is I live a very different style of life now
Speaker 2: that allows me to have enough spoons for the whole day.
Speaker 1: Marion stays in New Zealand for a couple more years.
Speaker 1: She and Lewis are broken up, so she moves into
Speaker 1: her own place, not a cockroach in sight. She lasts
Speaker 1: as long as she can there, grateful for the grand adventure,
Speaker 1: but eventually must move back to the States. She goes
Speaker 1: to San Francisco, where she's gotten a job at a
Speaker 1: travel tech startup. On paper, it's a fantastic place to land,
Speaker 1: a great opportunity. That's not lost on Marian.
Speaker 2: Tech is a hard place if you have sensory issues.
Speaker 2: So the first office that I worked at was like
Speaker 2: a preschool jungle gym. It was a huge warehouse, completely
Speaker 2: open concept. There was an adult swing set hanging from
Speaker 2: the rafters and one of those like parachutes that they
Speaker 2: use in preschools, like pinned to the ceiling. There were
Speaker 2: quote unquote family dinners for breakfast, lunch, and dinner. They
Speaker 2: wanted to keep you in the office. And it's so loud,
Speaker 2: and everyone was just on a lot of drugs. They
Speaker 2: were constantly partying. It was like a frat house, but
Speaker 2: a job that you got paid for and lots of
Speaker 2: people love that. There is a whole culture of that
Speaker 2: in San Francisco. But as someone with extreme social anxiety,
Speaker 2: I can be hard to be around and so I'm
Speaker 2: watching all my coworkers have fun together while I scowl
Speaker 2: at my desk, and it's very loud, So how do
Speaker 2: you concentrate? And speaking of spoons, they were just exhausted
Speaker 2: after an hour of being in the office. I used
Speaker 2: to come home after that job every day and just
Speaker 2: sob for hours, and I just didn't understand how people
Speaker 2: had careers, really, And so after that job, I got
Speaker 2: another tech job and then another tech job, and they
Speaker 2: were all exactly the same. The offices were all open
Speaker 2: concept and loud, and it was primarily focused on socializing.
Speaker 2: And there was this expectation that in order to be
Speaker 2: a good employee you had to be social and fun
Speaker 2: and I am neither. I'm just not those things. I
Speaker 2: am a hard worker and I'm smart, but social and
Speaker 2: fun are not my best qualities. And so I would
Speaker 2: often get feedback from my bosses that I needed to
Speaker 2: smile more, that I needed to be more pleasant, that
Speaker 2: I was too harsh. Every job I've ever had, I
Speaker 2: have either quit very quickly because of the social demands
Speaker 2: and the sensory input, or I've been fired because I'm
Speaker 2: quote unquote unpleasant or too blunt. And when you.
Speaker 1: Would be like, quote unquote unpleasant or too blunt. That's
Speaker 1: how you were being perceived. But was that how you
Speaker 1: perceived yourself or was there a disconnect between the way
Speaker 1: that you felt you were being and the way that
Speaker 1: other people saw you being.
Speaker 2: That is such a good question. I really thought I
Speaker 2: was being a good employee, that I was being smart.
Speaker 2: I would give my all to these jobs, and I
Speaker 2: cared about them. I absolutely drunk the kool aid at
Speaker 2: every tech company that this is going to be the
Speaker 2: next Facebook. Right, They all talked like such a big game.
Speaker 2: But one example of this is I was working at
Speaker 2: this travel startup and I had been invited by my
Speaker 2: boss to go to the CEO's house, his fancy Soma
Speaker 2: apartment in downtown San Francisco and have like a brainstorming day.
Speaker 2: And it would be eight hours with the head of marketing,
Speaker 2: the head of engineering, and the head of product and
Speaker 2: the CEO and me. I was making barely any money.
Speaker 2: I was a marketing assistant, and I felt, oh my god,
Speaker 2: I finally made it. They see how valuable I am.
Speaker 2: I'm so capable, this is the beginning of a great career.
Speaker 2: And I was so happy to go and so I
Speaker 2: really contributed. I don't know what their expectations of me were.
Speaker 2: That's part of the problem is I assumed that I
Speaker 2: was being invited as an equal, but maybe their assumption
Speaker 2: was that I was coming to take notes. I really
Speaker 2: don't know. And so I show up and I'm at
Speaker 2: this guy's kitchen table and we're all brainstorming. And part
Speaker 2: of my job was monitoring our community. I managed our
Speaker 2: social media accounts that I'd go into deep into Reddit
Speaker 2: and Facebook threads and collect information on how people felt
Speaker 2: about our app, and I presented that information. Oh, everyone
Speaker 2: hates the fact that there's not a calendar feature. Why
Speaker 2: are we focusing all of our time and attention on
Speaker 2: this random product that nobody wants when we should be
Speaker 2: doing the calendar feature. And I think there's just something
Speaker 2: about my tone that makes people feel like I'm talking
Speaker 2: down to them or criticizing them. My tone of vois
Speaker 2: during an interview is obviously very different from how it
Speaker 2: is in a meeting. Some people are surprised when I
Speaker 2: say that I'm unpleasant, but I think it's just my
Speaker 2: tone comes across as rude or harsh, And part of
Speaker 2: that might be because I'm a woman. Right, and that
Speaker 2: was I think this was the same year that lean
Speaker 2: In came out, and so I interpreted this year too
Speaker 2: harsh as a sexism problem and not necessarily that I
Speaker 2: was neurodivergent, if that makes sense. I think it's probably
Speaker 2: a bit of both. But yeah, So I had this meeting,
Speaker 2: I gave this feedback. I butted into the conversations. I'm
Speaker 2: interrupting because I know best, right, I'm the one that's
Speaker 2: been moderoring the community. I know the things. And the
Speaker 2: next day I get an email from my boss, very short,
Speaker 2: very kurt, saying you were incredibly inappropriate during the meeting yesterday.
Speaker 2: You owe everyone in an apology, and I was completely shocked.
Speaker 2: I'd thought I'd done an amazing job. It always came
Speaker 2: as a shock to me when I was told that
Speaker 2: I was being difficult.
Speaker 1: In twenty thirteen, Marian meets a man named Eliot on
Speaker 1: the dating site Okay Cupid. It is in fact his
Speaker 1: first ever online date, and in a life that has
Speaker 1: had its share of privilege but also a fair amount
Speaker 1: of difficulty, this is an extraordinary blessing. Eliot is her
Speaker 1: soulmate and just simply gets Marian right off the bat.
Speaker 1: He doesn't have the language, and neither does she, but
Speaker 1: somehow he knows what she needs and offers it to
Speaker 1: her with a beautiful, simple generosity of spirit and love.
Speaker 1: For example, one day, Elliot comes home to discover that
Speaker 1: Marian has had a particularly hard time. He asks if
Speaker 1: she's okay, and she says, no, I'm feeling a little
Speaker 1: bit autistic. The word just pops out. She just says it,
Speaker 1: almost as a joke. And then Elliot asks, do you
Speaker 1: want me to lie on you? And she answers yes please.
Speaker 1: His weight on her is like a prescription, and for
Speaker 1: what her nervous system already knows, a classic example of
Speaker 1: a secret she was keeping from herself, something her body
Speaker 1: knew but her brain couldn't.
Speaker 2: It was so crazy to me because that was ten
Speaker 2: years ago. This was well before brook Lennon was selling
Speaker 2: one hundred and fifty dollars weighted blankets. This was before
Speaker 2: autism and women was like very much part of our conversation.
Speaker 2: I didn't even know that much about autism. I don't
Speaker 2: know why I said that, but it just came out
Speaker 2: of me. I'd had some experience with autistic people. I
Speaker 2: did a lot of babysitting when I was younger and
Speaker 2: some of the kids were autistic. I'd watched rain Man
Speaker 2: with everybody else, so like I understood pieces of it,
Speaker 2: but I wasn't thinking about it in that way, and
Speaker 2: it would be ten years before i'd get actually officially
Speaker 2: diagnosed as autistic. But something in me knew that I
Speaker 2: needed the pressure of his body. I think it's called
Speaker 2: proprioceptive feedback. That lots of autistic people like to be squeezed.
Speaker 2: Temple Granted invented a hug machine fifty years ago because
Speaker 2: she wanted that squeezing pressure, and something in my body
Speaker 2: knew that I needed it. But more importantly, I knew
Speaker 2: that Elliott would give it to me without me feeling
Speaker 2: like shit about myself. In New Zealand with Lewis, if
Speaker 2: I saw a cockroach and started crying, fifty percent of
Speaker 2: my feelings in that movement would be, Oh my god,
Speaker 2: he's gonna leave me. I'm so pathetic. What is wrong
Speaker 2: with me that I can't handle a bug? He hates me.
Speaker 2: I'm making his life a living hell. Whereas I can
Speaker 2: be with Elliot and have a meltdown and have my
Speaker 2: nervous system just regulated. And all the therapy talk, and
Speaker 2: I can say, can you please lay on me? And
Speaker 2: no part of me is going to think that he
Speaker 2: is going to leave or that he won't love me
Speaker 2: because of it. He's always offered himself to me without
Speaker 2: any sort of judgment or expectation, and it's my favorite
Speaker 2: thing about him. We'll be right back.
Speaker 1: Marian and Elliot have a baby, a daughter named June.
Speaker 1: After June is born, Marian experiences a very brief honeymoon
Speaker 1: period of early motherhood, a state of absolute ease and tranquility.
Speaker 1: But brief is the keyword here. Soon it becomes extremely hard,
Speaker 1: because having a baby and then a toddler is nothing
Speaker 1: if not a prescription for overstimulation. Marian thought the tech
Speaker 1: offices in Silicon Valley were overstimulating, but now now there's this.
Speaker 1: Can you tell me about the baby shark incident?
Speaker 2: Oh boy, baby shark is the work of the devil.
Speaker 2: I'm convinced. It is a terrible thing that the world
Speaker 2: has given to parents. And my daughter was obsessed with it.
Speaker 2: So she is, I don't know one and a half
Speaker 2: or two, and she was very colicky and she had
Speaker 2: a lot of big feelings as two year olds do,
Speaker 2: and she's telling me that she wants to listen to
Speaker 2: Baby Shark. I'm exhausted. I'm at the end of my rope.
Speaker 2: I do not want to listen to baby Shark. I
Speaker 2: can't do it. But she's screaming and crying and screaming
Speaker 2: and crying, and so that is already over stimulation. And
Speaker 2: at this point I have to decide which is worse,
Speaker 2: the screaming of a baby or baby shark. And I
Speaker 2: decide that baby Shark is not as bad, so I
Speaker 2: put on Baby Shark. But she doesn't want to listen
Speaker 2: to Baby Shark. Baby Shark is the worst. She starts
Speaker 2: screaming and crying and screaming and crying. We go back
Speaker 2: and forth like this seventeen times, and by this point,
Speaker 2: the stimulation of not only the noise but the very
Speaker 2: normal I think maternal. Am I doing this wrong? Am
Speaker 2: I fucking up my kid? Because I will or will
Speaker 2: not be playing Baby Shark. She's got plumb in her hair,
Speaker 2: she's a wreck. I'm dreading bathtime because she hates getting
Speaker 2: her hair washed. So there's seventeen different thoughts whirling in
Speaker 2: my head. And because I don't know that I'm autistic,
Speaker 2: that I get over stimulated extremely easily, and that the
Speaker 2: parent that I am now would go into the other
Speaker 2: room or tap out or put on noise canceling earphones.
Speaker 2: I did not know this then at thirty, and I
Speaker 2: completely lose it. She screaming about baby Shark. I grab
Speaker 2: the plate that she's eating the plum off of, and
Speaker 2: I throw it against the wall and it breaks. And I'm,
Speaker 2: of course horrified by what I've done, and I run
Speaker 2: into the other room and I tell Elliot, I need
Speaker 2: you to take over, and he does. But that kind
Speaker 2: of incident of ramping up the overstimulation happened multiple times,
Speaker 2: and I would end up throwing things, just like I
Speaker 2: did when I was in high school. Right, I didn't
Speaker 2: know what was going on. The rage didn't end until
Speaker 2: the mystery did, and because I didn't know what was happening,
Speaker 2: I would force myself to endure it. All Moms, deal
Speaker 2: with this. What is wrong with you that you can't
Speaker 2: handle listening to baby Shark that you get so worked
Speaker 2: up because your baby is screaming.
Speaker 1: During this time, Marian was seeing therapists. This was nothing new.
Speaker 1: By her early thirties, she had been diagnosed or improperly
Speaker 1: diagnosed with anxiety depression, high sensitivity, probably Charett's. She'd been
Speaker 1: prescribed a bunch of SSRIs and none of this was working.
Speaker 1: None of it made sense.
Speaker 2: Every time I'd go to see a therapist or a psychiatrist,
Speaker 2: or do a group coaching, or do a yoga teacher training,
Speaker 2: or my gratitude journaling or whatever it was, none of
Speaker 2: it felt like it answered question of why I was
Speaker 2: the way that I was. And the pills did not help.
Speaker 2: They dampened it a little bit, But I never felt
Speaker 2: that same relief that people talk about when they take antidepressants.
Speaker 2: I never felt, oh my god, this weight has been lifted.
Speaker 2: It made me ten percent more capable. And I just
Speaker 2: kept going round and round in circles with different doctors
Speaker 2: trying to get some sort of answer, and they never
Speaker 2: could give me one. And why do you.
Speaker 1: Think that is? Because you were, in fact, and had
Speaker 1: been for a very long time, presenting with a whole
Speaker 1: series of behaviors and symptoms that would point to an
Speaker 1: autism diagnosis, even though you were extremely high functioning. What
Speaker 1: do you attribute that to?
Speaker 2: I wish I had an answer to this, Danny, because
Speaker 2: I feel like I'm going through it again now as
Speaker 2: an adult with other shit, sleep apnea, insulin resist, whatever
Speaker 2: the thing is. It feels like anytime I go to
Speaker 2: a doctor, there is oh, this person thinks it's this thing,
Speaker 2: and know, this doctor thinks it's this thing, and no,
Speaker 2: you have to try this. It's just it's endless. So
Speaker 2: I don't have a good answer.
Speaker 1: Well, I guess it was a bit of a leading question.
Speaker 1: How much of this is gender bias. There's a statistic
Speaker 1: that eighty percent of autistic girls remain undiagnosed by age eighteen.
Speaker 1: That would certainly not be true of autistic boys. And
Speaker 1: then you have the hysteria piece of it. Women presenting
Speaker 1: with these symptoms. In another century it would have been
Speaker 1: called like neurasthenia. You know, it's just overly tensative.
Speaker 2: Yeah, we don't love women just in general. But I
Speaker 2: feel like, especially doctors don't love women. I know that's
Speaker 2: a terrible thing to say, and I've luckily had some
Speaker 2: lovely doctors, but I've also had some terrible doctors. And yeah,
Speaker 2: eighty percent, eighty percent of women remain undiagnosed by the
Speaker 2: time they're eighteen. Autistic women, which means the vast majority
Speaker 2: of us are getting diagnosed the way that I did
Speaker 2: in our thirties, forties, sixties. I get emails every day
Speaker 2: from women of all decades, but all adults who didn't
Speaker 2: find out they were autistic until much later. All of
Speaker 2: our media representation about autism is focused on boys. Right.
Speaker 2: It's only in the past couple of years that we've
Speaker 2: started featuring autistic women and girls in movies and TV.
Speaker 2: But for the most part, we thought it was a
Speaker 2: boys disorder. It's completely bonkers to me. And it's not
Speaker 2: just autism, right, It's not even just developmental disorders. Right.
Speaker 2: Women are diagnosed later than men in over seven hundred
Speaker 2: different conditions. Right. Our leading cause of death for women
Speaker 2: is cardiovascular disease. And yet all of the quote unquote
Speaker 2: symptoms of heart attacks that we see in the media
Speaker 2: are the symptoms that men experience. A lot of pharmaceuticals
Speaker 2: aren't even tested on women. Our lab rats are primarily made.
Speaker 2: So it makes sense to me, given all of the
Speaker 2: data about medicine and women, that you're going to tell
Speaker 2: me that I'm anxious and you're not actually going to
Speaker 2: tell me what I really have. And I have a
Speaker 2: number of stories in the book of women with cancer
Speaker 2: and blood clots who went to the doctor and were
Speaker 2: told that they were just stressed instead of getting diagnosed.
Speaker 2: So it makes sense that when I go to my
Speaker 2: therapist after having a baby and I say I'm throwing
Speaker 2: plates against the wall, what's wrong with me? She says,
Speaker 2: welcome to motherhood. Being a parent is really hard. She
Speaker 2: does not say the word autism to me.
Speaker 1: When June is four and Marian is around thirty, she
Speaker 1: goes with a friend to see one of her favorite comedians,
Speaker 1: Hannah Gatsby, who themselves had been diagnosed with autism as
Speaker 1: an adult and had made this a part of their act.
Speaker 2: So Hannah Gatsby, who is just a gift to all
Speaker 2: of us, was performing in San Francisco, and I go
Speaker 2: to see their show with a friend and someone in
Speaker 2: the audience shouts out, I love you, Hannah, and Hannah's
Speaker 2: stumbles and you can see that they're visibly upset. And
Speaker 2: I've seen comedians it wasn't even heckling. The audience member
Speaker 2: was saying something kind, But it was the first time
Speaker 2: I'd seen a live performer be jarred by something that
Speaker 2: I would have been jarred by if I hear a noise,
Speaker 2: it'll stop me and it'll take a minute for me
Speaker 2: to get back on track. I can't filter out the
Speaker 2: outside world. And Hannah was late diagnosed artistic, and they
Speaker 2: say to the audience member, Hannah goes, can you please
Speaker 2: just not do that? It really makes me lose my place.
Speaker 2: I can't have anyone talking to me, just basically be quiet.
Speaker 2: It just filled me with recognition. I felt like I
Speaker 2: was seeing myself reflected in Hannah. I was really impressed
Speaker 2: that they set a boundary in front of thousands of people.
Speaker 2: I thought that was really cool that they could just
Speaker 2: ask for what they needed and get it. Nobody was upset,
Speaker 2: nobody noticed it. It didn't change anyone's perspective of the show.
Speaker 2: And so I went home and I did not google
Speaker 2: am I autistic. It would take another year for me
Speaker 2: for those pieces to click into place. But it was
Speaker 2: the first time I really felt myself, the whole of myself,
Speaker 2: reflected in someone else. I felt, oh, Hannah's experience of
Speaker 2: the world is also my experience of the world, and
Speaker 2: it made me feel less weird. It did make me
Speaker 2: feel less broken. And they did during their set talk
Speaker 2: a lot about their autism diagnosis and what it felt like,
Speaker 2: and they described it as being the only sober person
Speaker 2: in a room full of drunk people, which I loved
Speaker 2: and find very relatable. And so that was that Hannah
Speaker 2: Show was the first puzzle piece clicking into place over
Speaker 2: the next year before my autism diagnosis.
Speaker 1: And it takes you a bit to get to that diagnosis.
Speaker 1: After the Hannah Show, you at some point bring up
Speaker 1: to the therapist you're then seeing, I wonder what do
Speaker 1: you think about autism, and that therapist is quite dismissive
Speaker 1: and pretty much says to you, because you're married and
Speaker 1: you have a child, and you're charming, you can't be autistic.
Speaker 1: And one of the things that you write that I
Speaker 1: particularly highlighted that I love is I learned that autistic
Speaker 1: girls are more likely to wear masks because all girls
Speaker 1: are forced to wear them from the moment we open
Speaker 1: our eyes. The only difference is what the mask is hiding.
Speaker 1: So there's something that is so it's incredibly relatable, but
Speaker 1: it also is what confused your therapist, who sounded like
Speaker 1: a highly trained therapist who just was missing the boat
Speaker 1: on this and had all sorts of other diagnoses for you.
Speaker 1: But dismissed this, And something happened there which I would
Speaker 1: love you to talk a little bit about, which was that,
Speaker 1: for the first time, something tells you your own voice
Speaker 1: overrides what she's saying, something tells you that she's wrong.
Speaker 2: Yeah, it really is. And I think every woman, non
Speaker 2: binary person can probably relate to this, which is, I
Speaker 2: feel so overwhelmed in front of experts. I often just
Speaker 2: feel like, Oh, they know better than me, especially doctors,
Speaker 2: people with a lot of education. Who am I to
Speaker 2: question this? She's right, I'm wrong. I felt so stupid
Speaker 2: in that appointment. Oh you're charming. Autistic people have a
Speaker 2: hard time living a normal life. That's what she said.
Speaker 2: Of course, it didn't occur to me until later, and
Speaker 2: this is what made me think, wait a minute, like,
Speaker 2: I don't think she knows what she's talking about in
Speaker 2: this particular area. That made me realize for the first
Speaker 2: time that this one expert was not the beal and
Speaker 2: all of my own body. And by this point I'm
Speaker 2: thirty four. I had been dismissed so many times by doctors.
Speaker 2: I felt powerful, Oh, I can talk to someone else.
Speaker 2: I don't think this person has the answer. I need
Speaker 2: to find someone who knows more about this, and then
Speaker 2: it takes you a bit, but you do yes. I
Speaker 2: called pretty much every developmental kind of clinic autism clinic
Speaker 2: in Portland, and some of them hung up on me.
Speaker 2: I had a couple people be just really surprised that
Speaker 2: I was calling for myself and not my child. The
Speaker 2: autism kind of diagnostic community is very much focused on children.
Speaker 2: The assumption is that if you've made it to adulthood,
Speaker 2: you're fine, that you don't need to know. There's no
Speaker 2: reason to know. If you're not a student who needs accommodations,
Speaker 2: or in an office and need accommodations, then why would
Speaker 2: you need this information. So it was very hard for
Speaker 2: me to find someone, but I did a lot of digging, honestly,
Speaker 2: primarily on social media, just looking at other autistic women
Speaker 2: who've been diagnosed late in life and trying to find
Speaker 2: out who diagnosed them. And there are a number of
Speaker 2: people that are specialists in autism who do adult assessments.
Speaker 2: They are few and far between, but they do exist,
Speaker 2: and so I lucked into finding doctor Marsh. She is
Speaker 2: local to me, which is wild, and she spent thirty
Speaker 2: years diagnosing children in California and Oregon as part of
Speaker 2: the school system, So she did a lot of children's assessments.
Speaker 2: And as she got older and learned more about the
Speaker 2: people that were getting missed, primarily women and other marginalized genders.
Speaker 2: Black and brown people also get missed, she realized that
Speaker 2: she needed to be able to assess masked presentation. So
Speaker 2: the autism that we hide. Doctor marsh was like, okay,
Speaker 2: but what about the girls who are biting the inside
Speaker 2: of their cheeks or flaring their nostrils and only talking
Speaker 2: about the Spice Girls or Puerto Rico? What about them? Right?
Speaker 2: Because those they are not represented in the media. We
Speaker 2: don't talk about them, and we miss them. And so
Speaker 2: I found her and she was amazing, and she had
Speaker 2: a ton of tests, actually, and I think she did
Speaker 2: about five of them. I think two or three were
Speaker 2: the official AQ tests that a lot of doctors use.
Speaker 2: And then because she's been doing this for thirty years,
Speaker 2: she had developed her own tests and the ways that
Speaker 2: she sees autism be hidden by some people after many
Speaker 2: years of trying to hide, and so she has her
Speaker 2: own tests. And we did two over zoom where she
Speaker 2: would observe me and then ask me questions, and then
Speaker 2: by the third session we had the big reveal. But
Speaker 2: by that point, after talking to her for so long
Speaker 2: and reading so many memoirs of other autistic women, I
Speaker 2: knew already, and so her saying you're autistic. I wouldn't
Speaker 2: say it was anticlimactic, but at that point there was
Speaker 2: no doubt in my mind.
Speaker 1: It was a confirmation.
Speaker 2: Yeah, exactly. There's also a moment.
Speaker 1: With doctor Marsh, whare the two of you talk about
Speaker 1: whether to bring in your parents and you mull that
Speaker 1: because there's a part of you other things, well, maybe
Speaker 1: they would remember better than I would my early childhood,
Speaker 1: and doctor Marsh says, I trust you. The way you
Speaker 1: see yourself matters, and that was a revolutionary thing for you.
Speaker 2: Yeah, Like, when are we ever told, especially by medical professionals,
Speaker 2: I trust you and your interpretation of yourself. I trust
Speaker 2: that your breathing issues, that your chest pain, that your anxiety,
Speaker 2: that your sensory overwhelmed is real. When are we ever
Speaker 2: told that? Truly, it was one of the most emotional
Speaker 2: moments of my life to be told I don't need
Speaker 2: to ask anybody else, I don't need to talk to
Speaker 2: my parents, I don't need to bring in my f
Speaker 2: fourth grade teacher, my experience of the world is valid,
Speaker 2: and doctor marsh took that seriously.
Speaker 1: Marianne's older brother is getting married, and a family wedding
Speaker 1: is the definition of a lot. But by now Marianne
Speaker 1: has shared her diagnosis with her mother, and her mother
Speaker 1: surprises her with an extraordinarily empathic response. Her mother apologizes
Speaker 1: for not having seen or understood the signs in Marianne's childhood.
Speaker 1: That goes further and asks what can I do now?
Speaker 1: What do you need? This makes it infinitely more possible
Speaker 1: for marian to be herself now she has language tactics,
Speaker 1: a safety net, a map.
Speaker 2: I was shocked. My mother and I butt heads a lot.
Speaker 2: We're very similar in a lot of ways and very
Speaker 2: different in a lot of ways, and they don't often
Speaker 2: line up, so most of our conversations are argumentative in
Speaker 2: some way. It's really unpleasant, And it was really the
Speaker 2: first time I felt like I didn't have to defend
Speaker 2: myself or that she was really curious about my experience
Speaker 2: without trying to fix me, but instead here where I
Speaker 2: was coming from, and see me for who I was
Speaker 2: and not who she wants me to be, and It
Speaker 2: really was a complete shift in our relationship, and my
Speaker 2: parents just moved across the country to be near me.
Speaker 2: If you had asked me ten years ago whether I
Speaker 2: wanted to live twenty minutes for my parents, I would
Speaker 2: have laughed in your face. This is a shock to
Speaker 2: me that I was okay with this, and it really
Speaker 2: is a testament to the ways that my mom has
Speaker 2: been able to learn who I am as an adult.
Speaker 2: And really she has been so accommodating to me. She
Speaker 2: doesn't tease me anymore for needing to be inside a
Speaker 2: lot quiet, reading a book, needing an app She will
Speaker 2: ask if I need to leave a loud place. Right.
Speaker 2: She escorted me out of this pizza restaurant. There was
Speaker 2: seventeen of us at the table and I'm having a meltdown,
Speaker 2: And instead of telling me, oh, get your head out
Speaker 2: of your hands, you're being rude, instead she asked, can
Speaker 2: I take you home. I know a lot of autistic
Speaker 2: women who have not had this shift with their mothers,
Speaker 2: and I feel very lucky that I did. And a
Speaker 2: big part of it is just her willingness to listen
Speaker 2: and learn. She's read all the autism books now, it's amazing.
Speaker 1: The label Marianne finally received liberated her in countless ways
Speaker 1: connected her more deeply to her family and herself. But
Speaker 1: labels can also be constricting, confusing, even reductive or restrictive.
Speaker 1: Shortly after doctor Marsh gave Marianne her diagnosis, she wrote
Speaker 1: about her experience on a popular online site. Then she
Speaker 1: did what many writers avoid. She read the comments.
Speaker 2: We were not designed for this much information about our work.
Speaker 1: No talk about over stimulating.
Speaker 2: Yeah, and a lot of the comments, the vast majority,
Speaker 2: Like all comments, the vast majority were positive and lovely,
Speaker 2: and so many different stories of women who'd been late
Speaker 2: diagnosed with autism, adhd ocd endomitriosis, postpartum psychosis. Really, so
Speaker 2: many incredible stories from women in the comments. And the
Speaker 2: ten to twenty people who decided that they hated me.
Speaker 2: It was both awful and I also really empathize with them.
Speaker 2: I think the vast majority of them are parenting autistic
Speaker 2: children who look or act so much more quote unquote
Speaker 2: severe than me. And that's a whole other topic for
Speaker 2: another day. But I get that it's probably really hard
Speaker 2: if you're wrestling with this idea that you will be
Speaker 2: taking care of your child for the rest of your life,
Speaker 2: or maybe your child will never get married or have
Speaker 2: children or have a job. I understand that to look
Speaker 2: at someone like me who's married and has a child
Speaker 2: and is charming and owns a house, right, that those
Speaker 2: things feel fucking irritating and not fair. And so I
Speaker 2: think part of the reason it was so hard to
Speaker 2: read those comments just because I do get it to
Speaker 2: a certain extent. And I think when you write about anything,
Speaker 2: especially if you're a memoorist or an essays, you're writing
Speaker 2: these really personal stories and it's not I wasn't writing
Speaker 2: about their children or their experience. I was writing about mine.
Speaker 2: And I think it took me a long time to
Speaker 2: realize that. I think the kind of overarching comment that
Speaker 2: people made is, well, if she's autistic and Rainman is autistic,
Speaker 2: how can those two things be the same. What is
Speaker 2: even the point? We shouldn't have to label people, stop
Speaker 2: labeling everything. Let's just accept everyone for who they are.
Speaker 2: And I guess I understand that, and like I'd love
Speaker 2: for all of us to feel free to be you
Speaker 2: and me, and in a perfect world we wouldn't need labels.
Speaker 2: But I don't know what to tell you or her
Speaker 2: that it really sucks to go through your whole life
Speaker 2: feeling on the outside of everyone, like I just watched
Speaker 2: all my friends get thrown baby showers and hold down
Speaker 2: a job for more than six months and have friends
Speaker 2: and go out after work, and to just be constantly
Speaker 2: hammering myself with this idea that I was broken and
Speaker 2: less than I really cannot express what a relief it
Speaker 2: was to be given a reason why, and to not
Speaker 2: only be given a reason why, but to be given
Speaker 2: a community, a built in community of neurodivergent women who
Speaker 2: also experienced the world that I did. And essentially those
Speaker 2: commenters were trying to take that away from me and
Speaker 2: trying to take that away from other autistic people that
Speaker 2: for whatever reason, we shouldn't get to have this information
Speaker 2: about ourselves. It should be kept secret. At the time,
Speaker 2: it was very hurtful.
Speaker 1: It caused you briefly to doubt yourself, like to feel
Speaker 1: like you needed to get a second opinion.
Speaker 2: I went through the whole process again. I was like, Oh,
Speaker 2: maybe they're right, maybe I'm not autistic, maybe marsh got
Speaker 2: it wrong. So I spent another one thousand dollars trying
Speaker 2: to get another answer. So I found another specialist outside
Speaker 2: of the United States, so I could get this more
Speaker 2: like unbiased perspective. I didn't tell her about my first diagnosis.
Speaker 2: I did all the tests, I did a huge survey,
Speaker 2: long interview with her, and it was the same thing. Yes, absolutely,
Speaker 2: you're autistic. It was definitely validating to do it again
Speaker 2: and to feel like I had this armor. It's helpful
Speaker 2: to have two diagnoses, but it was unnecessary. I knew
Speaker 2: what I knew about myself, and it's one of the
Speaker 2: reasons I don't really use the internet anymore because it's minefield.
Speaker 1: It has now been four years since her diagnosis, and
Speaker 1: in that time life has vastly improved from Marian, as
Speaker 1: she puts it, it's like night and day.
Speaker 2: So June is eight and she's about to finish second grade,
Speaker 2: which is so sad. She's so big. She talks about
Speaker 2: my autism all the time. She tells everyone she'll be
Speaker 2: at school and I have the unit on neurodivergence, because
Speaker 2: of course they do. We live in Portland, Oregon, and
Speaker 2: they all have their little fidget spinners and June as well.
Speaker 2: My mommy's autistic, and she knows all about it, and
Speaker 2: she talks about her own needs and her own accommodations
Speaker 2: that she wants, and it's amazing. And I work from home,
Speaker 2: I write, I don't have to talk to anyone, and
Speaker 2: it's great. I have a door that closes. There's no
Speaker 2: like frat party beers after work. I really don't think
Speaker 2: about being autistic anymore. It doesn't cross my mind that often.
Speaker 2: I honestly rarely even talk about it anymore, because my
Speaker 2: whole life has been built inside these fences. I think
Speaker 2: that keeps me from rarely being overstimulated. I have the
Speaker 2: support system that I need to take care of me.
Speaker 2: I can be a better partner and a better mom
Speaker 2: and a better writer. Now that I have this information,
Speaker 2: it's just been so freeing to talk about it without
Speaker 2: being twisted up in knots about it. It also helps
Speaker 2: that the world knows more about autism now that it's
Speaker 2: actually not that strange. And I meet women at least
Speaker 2: once a week someone tells me that they're autistic, and
Speaker 2: it does feel very much. Especially in Portland, Oregon, part
Speaker 2: of our language, the way that we talk about neurodivergence,
Speaker 2: feels way different, and I think that's just impacted the
Speaker 2: ease of my life a lot.
Speaker 1: Here's Marianne reading one last passage from her beautiful, important memoir.
Speaker 2: At thirty four, I discovered that no power grows while
Speaker 2: cowering in the dark. Learning and sharing the word autism
Speaker 2: would heal decades of wounds, dozens of relationships, a lifetime
Speaker 2: of self hatred. Six letters gave language to the terrain
Speaker 2: of my life. I could read the original transcript of
Speaker 2: myself now a palimpsest of every person I'd ever tried
Speaker 2: to be. The Centers for Disease Control and Prevention estimates
Speaker 2: that about one in thirty six people is autistic. That said,
Speaker 2: we know autism goes undiagnosed and marginalized genders and people
Speaker 2: of color, so we can assume this number to be
Speaker 2: significantly higher. Women like me are being diagnosed every day.
Speaker 2: We are everywhere, hiding in plain sight, wearing the masks
Speaker 2: we were given as children. My heart aches for them
Speaker 2: and for her, the marian who begged to be changed
Speaker 2: at nine and nineteen, who ran into classroom closets and
Speaker 2: office bathrooms. Some day I would tell her, you will
Speaker 2: have a name for what you are, and you will
Speaker 2: never again have to keep it hidden.
Speaker 1: Family secrets is a production of iHeartRadio. Molly's Accur is
Speaker 1: the story editor and Dylan Fagin is the executive producer.
Speaker 1: If you have a family secret you'd like to share,
Speaker 1: please leave us a voicemail and your story could appear
Speaker 1: on an upcoming episode. Our number is one eight eight
Speaker 1: eight Secret zero. That's the number zero. You can also
Speaker 1: find me on Instagram at Danny Ryder. And if you'd
Speaker 1: like to know more about the story that inspired this podcast,
Speaker 1: check out my memoir Inheritance. For more podcasts from iHeartRadio,
Speaker 1: visit the iHeartRadio app, Apple Podcasts, or wherever you listen
Speaker 1: to your favorite shows.