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Speaker 1: Family Secrets is a production of iHeartRadio.

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Speaker 2: I see that girl with her cow licks and her

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Speaker 2: sleepy eyes, trying so hard to be the peppy, energetic,

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Speaker 2: playful kid everyone wanted her to be, and I imagine

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Speaker 2: taking her in my arms like some romance hero and saying,

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Speaker 2: you are not broken. There is a better, more beautiful

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Speaker 2: word for what you are.

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Speaker 1: That's Marianne Chambari, Portland, Oregon based essayist and author of

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Speaker 1: the recent memoir A Little Less Broken. Marianne's is a

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Speaker 1: story of a very particular kind of secret, the kind

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Speaker 1: so hidden that it seems possible that it doesn't exist

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Speaker 1: at all, and yet shapes the course of an entire life,

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Speaker 1: until finally it is named. I'm Danny Shapiro, and this

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Speaker 1: is Family Secrets. The secrets that are kept from us,

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Speaker 1: the secrets we keep from others, and the secrets we

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Speaker 1: keep from ourselves. Tell me about the landscape of your

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Speaker 1: childhood in Old Greenwich, Connecticut.

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Speaker 2: I think when I look back, it honestly feels almost

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Speaker 2: like I'm watching the movie of my childhood. We had

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Speaker 2: this house that butted up against the woods, and I

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Speaker 2: spent a lot of my childhood running through those woods.

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Speaker 2: Make little soup out of wild onions. And it wasn't

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Speaker 2: really until I was an adult that I looked back

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Speaker 2: at a lot of those kind of idyllic memories and

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Speaker 2: saw them for what they were, which for the most

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Speaker 2: part was me trying to hide from people and me

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Speaker 2: feeling like I was not like everybody else. I did

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Speaker 2: not want to be around my family, as loving and

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Speaker 2: wonderful as they are. I am the only girl, and

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Speaker 2: I have three younger brothers, and there's my parents.

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Speaker 1: So it was a.

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Speaker 2: Big, very bustling house right near downtown Old Greenwage, and

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Speaker 2: I describe it as the Weasley House from Harry Potter.

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Speaker 2: It was like tilting to one side as my parents

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Speaker 2: built up. Our house was a shack compared to the

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Speaker 2: rest of the houses in Greenwich. I was very serious

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Speaker 2: compared to my siblings who were always yelling and having

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Speaker 2: nerf fights and playing video games, and I was quiet

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Speaker 2: and reading all the time and wanting to escape into

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Speaker 2: the woods. And so most of my childhood actually feels

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Speaker 2: like there's two sides of it. There's the movie that

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Speaker 2: I'm watching, the very pleasant ville idyllic suburban American childhood,

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Speaker 2: and then there was the interior of what was happening

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Speaker 2: within me, which was that I hated myself most of

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Speaker 2: the time and I felt separate from the rest of

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Speaker 2: my family. My dad was a journalist. We moved to

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Speaker 2: Connecticut when I was five or six. He got a

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Speaker 2: job at the New York Times, so it was his

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Speaker 2: absolute dream job. I think he was the editor of

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Speaker 2: the Connecticut section for a while before it no longer existed.

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Speaker 2: He wrote a column called family Man, where he wrote

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Speaker 2: about being a dad and about me and my siblings.

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Speaker 2: And I found a note. So my dad is a

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Speaker 2: bit of a paper hoarder. And they recently sold the

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Speaker 2: house in Connecticut to move out to Oregon, and my

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Speaker 2: dad gave me boxes of old papers that he's kept

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Speaker 2: over the years, and I was going through them literally

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Speaker 2: just two days ago, and I found this little scrap

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Speaker 2: of paper where he had been transcribing the conversations that

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Speaker 2: I was having with my friends at my third grade

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Speaker 2: birthday party. And he saved that transcription, so it says

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Speaker 2: I have a crush on Cory. Don't tell anyone. I

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Speaker 2: would be so embarrassed if anyone knew. And I very

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Speaker 2: vividly remember a week after that birthday, his family man

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Speaker 2: column was about my third grade slumber party and all

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Speaker 2: the boys we had a crush on, And all my

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Speaker 2: friends came to school the next day and were livid

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Speaker 2: with me and livid at my dad because their parents

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Speaker 2: had told them. Oh, Marian's dad wrote an article in

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Speaker 2: such and such a newspaper about all the crushes you have.

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Speaker 2: And I already did not have very many friends. But

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Speaker 2: that was really that killed any chance I had of

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Speaker 2: having any sort of like real intimate relationships with girls

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Speaker 2: in elementary school especially. So yes, my dad was a

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Speaker 2: journalist but it came with some very serious downsides for

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Speaker 2: a while.

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Speaker 1: So he named names.

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Speaker 2: Yeah, he named names. You didn't even change them, like

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Speaker 2: he wasn't he was not thinking. So old greenwage is.

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Speaker 2: I describe it as the love child between Norman Rockwell

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Speaker 2: and a boat shoe. All of my friends had sail boats,

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Speaker 2: and they belonged to a beach club. But it's the

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Speaker 2: type of wealthy that you wouldn't necessarily know it by

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Speaker 2: looking at someone. And everyone always wore the same clothes,

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Speaker 2: right they're wearing their Nantucket reds. When I was in

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Speaker 2: middle school, I think everyone started wearing ug boots and

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Speaker 2: I was devastated to not have a pair of ug boots. So,

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Speaker 2: by its very nature was very exclusive. You were on

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Speaker 2: the outside if you didn't have the right clothing or

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Speaker 2: live in the right house. Even from an extremely young age,

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Speaker 2: it would be very obvious who was one of us

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Speaker 2: and who wasn't, and I obviously was not. My parents

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Speaker 2: did not care about ugs. We shopped at DSW and

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Speaker 2: my mom is very thrifty and very environmentally conscious before

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Speaker 2: it was cool, and so she was always hand washing

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Speaker 2: our ziploc bags and hanging them to dry around the house.

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Speaker 2: There was always food that had gone off in the fridge,

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Speaker 2: for sure. So I was already different in my family

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Speaker 2: simply by the nature of my gender, right, I was

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Speaker 2: the girl, and then I had these younger boys. I

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Speaker 2: was different because my parents were journalists and not hedge

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Speaker 2: fund manaitures, and so in Greenwich, if you're not in finance,

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Speaker 2: you're poor, right, which is obviously not true. We were

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Speaker 2: like very comfortably middle class, but like it felt that

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Speaker 2: way growing up. I already had two strikes against me.

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Speaker 2: So on top of that, my mom is also Puerto Rican,

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Speaker 2: so then there's this racial element as well. I loved

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Speaker 2: talking about Puerto Rico. Growing up, I learned Spanish and

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Speaker 2: English at the same time. I would wear my abuillos guayabra,

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Speaker 2: which is this like very typical kind of Puerto Rican

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Speaker 2: and Cuban white button down shirt, and I would wear

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Speaker 2: it to school. I would bring mpanadas to school, So

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Speaker 2: then there's the kind of racial difference. And then on

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Speaker 2: top of all of that, I was quote unquote weird.

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Speaker 2: I talk a lot. I have no filter, and so

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Speaker 2: I would often just say the thing that I was

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Speaker 2: feeling in any given moment. There was this kid. He

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Speaker 2: was very rich, and everyone called him rich bitch behind

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Speaker 2: his back. That was his nickname, which is so silly

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Speaker 2: because it's Greenwich, Connecticut and everybody was rich, but he

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Speaker 2: was richer than all the other rich kids, and I

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Speaker 2: did not realize that I couldn't just call him rich

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Speaker 2: bitch to his face, and so I did, which is

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Speaker 2: when the vice principal took me to her office and

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Speaker 2: said that I was the worst kid in fourth grade.

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Speaker 2: And it's so bonkers to me now because I did

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Speaker 2: not feel bad. I got good grades, I was smart,

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Speaker 2: I showed up on time. I was not the one

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Speaker 2: inventing the nickname rich Bitch. I was not the one

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Speaker 2: throwing kickballs at people's heads at recess. I was not

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Speaker 2: one of the bitchy popular girls who was constantly mean

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Speaker 2: behind other kids' backs. I wasn't passing shitty notes. But

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Speaker 2: because I didn't have a filter and I couldn't pretend

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Speaker 2: to be someone I wasn't in the way that a

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Speaker 2: lot of the kids could, it was immediately obvious to

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Speaker 2: people that I was different, and different was bad. I

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Speaker 2: didn't remember this until recently, but I didn't have a

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Speaker 2: lot of control over my body in the same way

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Speaker 2: that other kids did. So a very easy example is

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Speaker 2: said I was terrible at sports, right, not a huge deal.

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Speaker 2: Lots of people are terrible at sports. I would be

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Speaker 2: the one in the far far outfield picking dantellions or whatever.

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Speaker 2: But I also had constant pea accidents all the way

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Speaker 2: until I was in middle school. Actually, I remember in

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Speaker 2: first or second grade meeting my next door neighbors for

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Speaker 2: the first time, and they were so funny. Oh my god,

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Speaker 2: I was obsessed with them right away, and they were

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Speaker 2: talking and joking to me, and I was just laughing

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Speaker 2: so hard and completely not conscious of the fact that

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Speaker 2: I needed to pee, and I just completely wet myself

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Speaker 2: in front of these like very cool, funny kids. I

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Speaker 2: was probably in second grade, so let's say I was

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Speaker 2: eight years old, but that would continue, right. It happened

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Speaker 2: in class. It happened probably in third or fourth grade

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Speaker 2: at a friend's house. Same thing. It felt like my

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Speaker 2: body and my brain were constantly divided, and I wasn't

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Speaker 2: often aware of what was happening to my body until

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Speaker 2: it was too late, And most of the time it

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Speaker 2: involved peeing on the floor of my friend's houses up

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Speaker 2: until I was thirteen. So the most recent memory I

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Speaker 2: was thirteen or fourteen. I was trick or treating, you know,

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Speaker 2: it's that year when everyone tells you you're too old

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Speaker 2: to trick or treat, but you go anyway. And we

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Speaker 2: were like knocking on someone's door, and as soon as

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Speaker 2: she opened, it occurred to me, Oh my god, I

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Speaker 2: have to pee so bad, And I was like, can

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Speaker 2: I use your bathroom? And I sprinted past her into

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Speaker 2: her bathroom, peed all over her bathroom floor, and then

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Speaker 2: just left it there. God, it's so embarrassing in eindsight,

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Speaker 2: but really I didn't even remember that these things had happened.

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Speaker 2: Until the past couple of years. Really well, that.

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Speaker 1: Makes so much sense because it seems to me correct

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Speaker 1: me if I'm wrong, But there's this kind of like

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Speaker 1: disc connect between interior and exterior, between body and brain,

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Speaker 1: between brain and environment that like the way that you

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Speaker 1: describe it, and this profound sort of excess of stimulation.

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Speaker 1: I mean, one of the things that struck me that

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Speaker 1: you wrote about is there's some really wonderful sprinkling through

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Speaker 1: of theory In your book and The Invisible World's theory

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Speaker 1: of autism, the researchers Kamela and Henry Markram suggest that

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Speaker 1: autism isn't just a differently wired brain, but a brain

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Speaker 1: with more wiring in other words, supercharged. And so it

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Speaker 1: feels like with that supercharged brain, I can imagine that

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Speaker 1: it would disconnect from just the oh I need to

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Speaker 1: pee in advance.

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Speaker 2: I had really never thought about it that way. That

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Speaker 2: is an extremely articulate explanation of what I think is happening. Yeah,

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Speaker 2: I think I think that's exactly it. The example I

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Speaker 2: always use is just when I'm working from home, right,

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Speaker 2: I'm in my office, I'm trying to write and a

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Speaker 2: car slashes by outside and my next door neighbor is

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Speaker 2: hammering at his roof again for the millionth time, and

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Speaker 2: there's a dog barking across the street, and my husband's

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Speaker 2: chair is squeaking upstairs, and my cat is trying to

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Speaker 2: get into the office, and all of those things are

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Speaker 2: competing for an equal amount of attention, and it's very

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Speaker 2: hard to just focus on one of those things, and

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Speaker 2: so what ends up happening is other stuff gets completely forgotten. So,

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Speaker 2: for example, my hands and feet will get really numb

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Speaker 2: because I haven't moved them, or I'll have to go

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Speaker 2: to the bathroom and then not realize until it's an emergency.

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Speaker 2: And so I can imagine on Halloween when you're thirteen,

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Speaker 2: you're laughing with your friends and you're full of candy

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Speaker 2: and you've got a sugar rush and it's freezing cold outside.

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Speaker 2: The having to pee is just it's being drowned out

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Speaker 2: by the fifty other things that are competing for your attention.

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Speaker 2: In today's world, this cluster of behaviors would likely be

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Speaker 2: recognized earlier, a diagnosis made along with accommodations. Perhaps now

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Speaker 2: a young Marian could grow up truly knowing herself, accepting herself.

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Speaker 2: But this is not remotely what happened for Marian. All

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Speaker 2: the unknowns were manifesting in her body, her environment, all

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Speaker 2: of which were deeply misunderstood by those around her. And

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Speaker 2: she misunderstood herself too, of course she did. She had

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Speaker 2: no map. It's terrible for people to misunderstand you. It's

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Speaker 2: terrible to be told that you're the worst kid in

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Speaker 2: fourth grade when you really just thought you were just

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Speaker 2: repeating what everyone else was doing. You don't see how

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Speaker 2: it's different, right, But the misunderstanding yourself, I really did.

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Speaker 2: I just felt like I was insane constantly for decades.

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Speaker 2: I did not know that the constant pe accidents, the

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Speaker 2: blunt honesty, the knee to retreat to small, dark, quiet places,

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Speaker 2: the stimming, that these things were part of a collection

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Speaker 2: of conditions that's called autism. And so the stimming is

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Speaker 2: a great example. So for a really long time, I

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Speaker 2: thought that I had ticks or later turets. That was

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Speaker 2: one of my many diagnoses in my twenties was that

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Speaker 2: I had tourets because I was very often twitching my face.

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Speaker 2: I would blink really hard and then flare my nostrils,

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Speaker 2: and I remember the first time someone called me out

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Speaker 2: on it was a guy that I had a crush

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Speaker 2: on in sixth grade, and he said, why do you

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Speaker 2: move your face all weird like that? You look like

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Speaker 2: a rabbit. And so there was this very visible indicator

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Speaker 2: from very early on that I was different, that there's

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Speaker 2: something wrong with me. And again I just internalized that.

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Speaker 2: Over the years, I just internalized all the ways that

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Speaker 2: I was different, and because I didn't know I was autistic,

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Speaker 2: I just thought there was something wrong with me. I

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Speaker 2: was broken. I'm weird, I'm twitchy, I'm gross, I'm moody,

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Speaker 2: like name fun adjective. And I had hurled that at

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Speaker 2: myself constantly.

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Speaker 1: Marianne writes, at thirteen, all I knew was what I

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Speaker 1: had been told. And there are only so many times

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Speaker 1: you can tell a girl she's broken before she starts

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Speaker 1: to believe it. This has such a universal ring of truth,

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Speaker 1: doesn't it, Because as children, as teenagers, we tend to

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Speaker 1: define ourselves by who we're told we are. Marianne's been

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Speaker 1: told she's weird and bad, that she's just too much,

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Speaker 1: and now she's a teenager, and some of this starts

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Speaker 1: manifesting itself as anger. It's a perfect storm. She smashes things,

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Speaker 1: breaks things, and also is being broken diagnoses all of

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Speaker 1: them wrong are hurled at her too, anger, management problems,

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Speaker 1: emotional dysregulation. For now, her bones know, she doesn't have

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Speaker 1: the language.

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Speaker 2: It's like growing up thinking that you're one race and

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Speaker 2: then you're not, or thinking that your parents are your

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Speaker 2: biological parents, and then you find out you're adopted. It's

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Speaker 2: like this core piece of information, even if no one

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Speaker 2: was quote unquote keeping it from you, it's still there,

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Speaker 2: you still know it. I think a lot about Sylvia Plath. Actually,

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Speaker 2: a writing teacher of mine was explaining that many people

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Speaker 2: in Sylvia's family had killed themselves, but nobody told her,

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Speaker 2: and so she's feeling the feelings, the depression and the

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Speaker 2: suicidal ideation, all of that, but not knowing why. And

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Speaker 2: obviously this was ages ago, and I cannot diagnose anyone

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Speaker 2: through history. But I just feel like hidden knowledge exists

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Speaker 2: in our bodies, and if we're given access to it,

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Speaker 2: if we know why we are the way we are, like,

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Speaker 2: could it save us? Could it have saved Sylvia to

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Speaker 2: know that it wasn't just her, that this ran in

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Speaker 2: her family, that this thing that she's feeling is genetic.

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Speaker 2: It has nothing to do with her or something that

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Speaker 2: she's quote unquote doing or not doing wrong. And I

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Speaker 2: think more information is only a good thing.

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Speaker 1: We'll be back in a moment with more family secrets.

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Speaker 1: Marian goes to college in North Carolina at Davidson and

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Speaker 1: it's the first extended time she's been away from her family.

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Speaker 1: She travels to the UK for a semester abroad, which,

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Speaker 1: when she falls in love with a man named Lewis,

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Speaker 1: turns into a much longer period of time overseas once

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Speaker 1: she graduates and moves in with him, first to London,

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Speaker 1: then to New Zealand, where his family lives.

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Speaker 2: So, yeah, I moved in. I'm twenty five years old.

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Speaker 2: I have moved across the world with my boyfriend. We

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Speaker 2: had this beautiful romantic love story in London, straight out

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Speaker 2: of some rom com with Hugh Grant. He even looked

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Speaker 2: a little bit like Hugh Grant. And everything was great

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Speaker 2: when we're living in London and we're both in this

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Speaker 2: city that we love and living in separate apartments. But

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Speaker 2: once we were in New Zealand, I'm confronted with so

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Speaker 2: many differences. I don't have a job, I'm living with

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Speaker 2: his parents, who are the loveliest human beings, but are

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Speaker 2: still someone else's parents and you're in their home. I'm

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Speaker 2: in a country that I'm completely unfamiliar with, and the

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Speaker 2: houses infested with cockroaches, which are my biggest, absolute, biggest fear.

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Speaker 2: I became a completely different person from the woman that

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Speaker 2: he met in London. I went from fun, loving and

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Speaker 2: adventurous and this performance of a sexy American to suddenly

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Speaker 2: being afraid all the time. Constantly, I was afraid of

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Speaker 2: his parents. I would hide in his room so that

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Speaker 2: I wouldn't have to talk to them. I would stay hungry

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Speaker 2: and pretend that I didn't want dinner because I just

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Speaker 2: couldn't keep up that performance of the fun American girlfriend.

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Speaker 2: And the cockroach is the constant. If you've ever had

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Speaker 2: a phobia, it's so silly saying it out loud, because

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Speaker 2: it's just a bug. But I cannot express the sense

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Speaker 2: of fear that I lived in every second of every

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Speaker 2: day in that house, like I could not move, I

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Speaker 2: couldn't get out of bed or go to the bathroom

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Speaker 2: without scouring every single corner and every wall for a cockroach.

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Speaker 2: And a lot of the time because there were a

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Speaker 2: lot of cockroaches, there would be one, and it felt

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Speaker 2: like being electrocuted, and so that took everything out of me.

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Speaker 2: And it wasn't until years later that I discovered this

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Speaker 2: idea of spoon theory, which was created by a woman

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Speaker 2: with lupus I believe, who was explaining to her friend.

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Speaker 2: They're having dinner and the friend is trying to understand

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Speaker 2: what it's like to live with lupus, and so Christine

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Speaker 2: I think is her name, hands a bunch of spoons

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Speaker 2: to her friend and says, Okay, these are your spoons

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Speaker 2: for the day. Everything you do takes a spoon. You

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Speaker 2: want to get up and wash your hair and put

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Speaker 2: on makeup and get dressed, that's going to be a spoon.

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Speaker 2: You need to commute to work, Oh, but that would

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Speaker 2: usually be a spoon, But there's an accident and there's

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Speaker 2: a lot of traffic and it takes an hour and

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Speaker 2: a half. That's actually going to cost you three spoons.

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Speaker 2: By the time you get to work, you're halfway through

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Speaker 2: your spoons already. And by the end of the day,

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Speaker 2: if you're out of spoons, you cannot feed yourself, you

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Speaker 2: can't go to the gym, you can't go out with friends,

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Speaker 2: you collapse into bed without brushing your teeth. That's how

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Speaker 2: I lived, that's how I continue to live. And so

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Speaker 2: living in New Zealand with parents who were not my own,

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Speaker 2: who wanted to talk to me all the time, and

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Speaker 2: I had to perform and be a good house guest,

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Speaker 2: essentially in my own home for six months, followed by

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Speaker 2: living with a phobia, it meant that I was completely incapacitated.

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Speaker 2: I didn't work, I barely got out of bed, and

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Speaker 2: me and the boyfriend lasted six months after I moved

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Speaker 2: to New Zealand because I am with a person now

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Speaker 2: who deals with that all the time. But you know,

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Speaker 2: at twenty five, when you're just learning how to be

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Speaker 2: into relationships, that was not something that he was capable

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Speaker 2: of handling. And because I didn't understand it, I didn't

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Speaker 2: understand that my spoons were being blown by lunchtime, there

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Speaker 2: was no way to fix it. And this is what

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Speaker 2: I'm talking about, how knowledge of yourself is so much power.

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Speaker 2: Is I live a very different style of life now

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Speaker 2: that allows me to have enough spoons for the whole day.

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Speaker 1: Marion stays in New Zealand for a couple more years.

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Speaker 1: She and Lewis are broken up, so she moves into

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Speaker 1: her own place, not a cockroach in sight. She lasts

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Speaker 1: as long as she can there, grateful for the grand adventure,

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Speaker 1: but eventually must move back to the States. She goes

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Speaker 1: to San Francisco, where she's gotten a job at a

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Speaker 1: travel tech startup. On paper, it's a fantastic place to land,

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Speaker 1: a great opportunity. That's not lost on Marian.

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Speaker 2: Tech is a hard place if you have sensory issues.

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Speaker 2: So the first office that I worked at was like

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Speaker 2: a preschool jungle gym. It was a huge warehouse, completely

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Speaker 2: open concept. There was an adult swing set hanging from

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Speaker 2: the rafters and one of those like parachutes that they

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Speaker 2: use in preschools, like pinned to the ceiling. There were

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Speaker 2: quote unquote family dinners for breakfast, lunch, and dinner. They

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Speaker 2: wanted to keep you in the office. And it's so loud,

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Speaker 2: and everyone was just on a lot of drugs. They

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Speaker 2: were constantly partying. It was like a frat house, but

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Speaker 2: a job that you got paid for and lots of

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Speaker 2: people love that. There is a whole culture of that

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Speaker 2: in San Francisco. But as someone with extreme social anxiety,

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Speaker 2: I can be hard to be around and so I'm

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Speaker 2: watching all my coworkers have fun together while I scowl

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Speaker 2: at my desk, and it's very loud, So how do

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Speaker 2: you concentrate? And speaking of spoons, they were just exhausted

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Speaker 2: after an hour of being in the office. I used

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Speaker 2: to come home after that job every day and just

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Speaker 2: sob for hours, and I just didn't understand how people

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Speaker 2: had careers, really, And so after that job, I got

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Speaker 2: another tech job and then another tech job, and they

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Speaker 2: were all exactly the same. The offices were all open

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Speaker 2: concept and loud, and it was primarily focused on socializing.

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Speaker 2: And there was this expectation that in order to be

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Speaker 2: a good employee you had to be social and fun

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Speaker 2: and I am neither. I'm just not those things. I

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Speaker 2: am a hard worker and I'm smart, but social and

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Speaker 2: fun are not my best qualities. And so I would

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Speaker 2: often get feedback from my bosses that I needed to

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Speaker 2: smile more, that I needed to be more pleasant, that

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00:22:49,760 --> 00:22:52,719
Speaker 2: I was too harsh. Every job I've ever had, I

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Speaker 2: have either quit very quickly because of the social demands

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Speaker 2: and the sensory input, or I've been fired because I'm

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Speaker 2: quote unquote unpleasant or too blunt. And when you.

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Speaker 1: Would be like, quote unquote unpleasant or too blunt. That's

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Speaker 1: how you were being perceived. But was that how you

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Speaker 1: perceived yourself or was there a disconnect between the way

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Speaker 1: that you felt you were being and the way that

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Speaker 1: other people saw you being.

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Speaker 2: That is such a good question. I really thought I

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Speaker 2: was being a good employee, that I was being smart.

401
00:23:24,960 --> 00:23:27,719
Speaker 2: I would give my all to these jobs, and I

402
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Speaker 2: cared about them. I absolutely drunk the kool aid at

403
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Speaker 2: every tech company that this is going to be the

404
00:23:32,600 --> 00:23:36,080
Speaker 2: next Facebook. Right, They all talked like such a big game.

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Speaker 2: But one example of this is I was working at

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Speaker 2: this travel startup and I had been invited by my

407
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Speaker 2: boss to go to the CEO's house, his fancy Soma

408
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Speaker 2: apartment in downtown San Francisco and have like a brainstorming day.

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Speaker 2: And it would be eight hours with the head of marketing,

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Speaker 2: the head of engineering, and the head of product and

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Speaker 2: the CEO and me. I was making barely any money.

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Speaker 2: I was a marketing assistant, and I felt, oh my god,

413
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Speaker 2: I finally made it. They see how valuable I am.

414
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Speaker 2: I'm so capable, this is the beginning of a great career.

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Speaker 2: And I was so happy to go and so I

416
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Speaker 2: really contributed. I don't know what their expectations of me were.

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Speaker 2: That's part of the problem is I assumed that I

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Speaker 2: was being invited as an equal, but maybe their assumption

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Speaker 2: was that I was coming to take notes. I really

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Speaker 2: don't know. And so I show up and I'm at

421
00:24:28,359 --> 00:24:31,360
Speaker 2: this guy's kitchen table and we're all brainstorming. And part

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00:24:31,400 --> 00:24:34,479
Speaker 2: of my job was monitoring our community. I managed our

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Speaker 2: social media accounts that I'd go into deep into Reddit

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Speaker 2: and Facebook threads and collect information on how people felt

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Speaker 2: about our app, and I presented that information. Oh, everyone

426
00:24:45,640 --> 00:24:48,440
Speaker 2: hates the fact that there's not a calendar feature. Why

427
00:24:48,440 --> 00:24:51,199
Speaker 2: are we focusing all of our time and attention on

428
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Speaker 2: this random product that nobody wants when we should be

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Speaker 2: doing the calendar feature. And I think there's just something

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Speaker 2: about my tone that makes people feel like I'm talking

431
00:25:00,280 --> 00:25:04,280
Speaker 2: down to them or criticizing them. My tone of vois

432
00:25:04,320 --> 00:25:06,479
Speaker 2: during an interview is obviously very different from how it

433
00:25:06,520 --> 00:25:08,359
Speaker 2: is in a meeting. Some people are surprised when I

434
00:25:08,359 --> 00:25:10,879
Speaker 2: say that I'm unpleasant, but I think it's just my

435
00:25:11,040 --> 00:25:14,000
Speaker 2: tone comes across as rude or harsh, And part of

436
00:25:14,040 --> 00:25:16,000
Speaker 2: that might be because I'm a woman. Right, and that

437
00:25:16,160 --> 00:25:18,240
Speaker 2: was I think this was the same year that lean

438
00:25:18,280 --> 00:25:21,840
Speaker 2: In came out, and so I interpreted this year too

439
00:25:21,920 --> 00:25:25,560
Speaker 2: harsh as a sexism problem and not necessarily that I

440
00:25:25,600 --> 00:25:28,760
Speaker 2: was neurodivergent, if that makes sense. I think it's probably

441
00:25:28,760 --> 00:25:31,439
Speaker 2: a bit of both. But yeah, So I had this meeting,

442
00:25:31,800 --> 00:25:34,920
Speaker 2: I gave this feedback. I butted into the conversations. I'm

443
00:25:34,960 --> 00:25:37,840
Speaker 2: interrupting because I know best, right, I'm the one that's

444
00:25:37,840 --> 00:25:40,439
Speaker 2: been moderoring the community. I know the things. And the

445
00:25:40,480 --> 00:25:43,600
Speaker 2: next day I get an email from my boss, very short,

446
00:25:43,760 --> 00:25:47,320
Speaker 2: very kurt, saying you were incredibly inappropriate during the meeting yesterday.

447
00:25:47,359 --> 00:25:51,800
Speaker 2: You owe everyone in an apology, and I was completely shocked.

448
00:25:51,800 --> 00:25:54,920
Speaker 2: I'd thought I'd done an amazing job. It always came

449
00:25:54,920 --> 00:25:56,679
Speaker 2: as a shock to me when I was told that

450
00:25:56,720 --> 00:26:00,280
Speaker 2: I was being difficult.

451
00:26:01,119 --> 00:26:05,119
Speaker 1: In twenty thirteen, Marian meets a man named Eliot on

452
00:26:05,160 --> 00:26:08,679
Speaker 1: the dating site Okay Cupid. It is in fact his

453
00:26:08,840 --> 00:26:12,119
Speaker 1: first ever online date, and in a life that has

454
00:26:12,160 --> 00:26:14,879
Speaker 1: had its share of privilege but also a fair amount

455
00:26:14,880 --> 00:26:19,639
Speaker 1: of difficulty, this is an extraordinary blessing. Eliot is her

456
00:26:19,720 --> 00:26:23,560
Speaker 1: soulmate and just simply gets Marian right off the bat.

457
00:26:24,240 --> 00:26:27,320
Speaker 1: He doesn't have the language, and neither does she, but

458
00:26:27,400 --> 00:26:30,399
Speaker 1: somehow he knows what she needs and offers it to

459
00:26:30,480 --> 00:26:34,120
Speaker 1: her with a beautiful, simple generosity of spirit and love.

460
00:26:35,280 --> 00:26:38,600
Speaker 1: For example, one day, Elliot comes home to discover that

461
00:26:38,640 --> 00:26:42,000
Speaker 1: Marian has had a particularly hard time. He asks if

462
00:26:42,040 --> 00:26:45,760
Speaker 1: she's okay, and she says, no, I'm feeling a little

463
00:26:45,760 --> 00:26:49,880
Speaker 1: bit autistic. The word just pops out. She just says it,

464
00:26:50,000 --> 00:26:53,480
Speaker 1: almost as a joke. And then Elliot asks, do you

465
00:26:53,480 --> 00:26:57,280
Speaker 1: want me to lie on you? And she answers yes please.

466
00:26:58,160 --> 00:27:00,240
Speaker 1: His weight on her is like a prescription, and for

467
00:27:00,320 --> 00:27:04,439
Speaker 1: what her nervous system already knows, a classic example of

468
00:27:04,440 --> 00:27:07,679
Speaker 1: a secret she was keeping from herself, something her body

469
00:27:07,760 --> 00:27:10,520
Speaker 1: knew but her brain couldn't.

470
00:27:11,640 --> 00:27:15,480
Speaker 2: It was so crazy to me because that was ten

471
00:27:15,560 --> 00:27:19,040
Speaker 2: years ago. This was well before brook Lennon was selling

472
00:27:19,160 --> 00:27:22,040
Speaker 2: one hundred and fifty dollars weighted blankets. This was before

473
00:27:22,600 --> 00:27:25,960
Speaker 2: autism and women was like very much part of our conversation.

474
00:27:26,600 --> 00:27:29,040
Speaker 2: I didn't even know that much about autism. I don't

475
00:27:29,080 --> 00:27:32,600
Speaker 2: know why I said that, but it just came out

476
00:27:32,640 --> 00:27:35,440
Speaker 2: of me. I'd had some experience with autistic people. I

477
00:27:35,520 --> 00:27:37,320
Speaker 2: did a lot of babysitting when I was younger and

478
00:27:37,560 --> 00:27:40,200
Speaker 2: some of the kids were autistic. I'd watched rain Man

479
00:27:40,240 --> 00:27:43,520
Speaker 2: with everybody else, so like I understood pieces of it,

480
00:27:43,560 --> 00:27:46,840
Speaker 2: but I wasn't thinking about it in that way, and

481
00:27:46,880 --> 00:27:49,480
Speaker 2: it would be ten years before i'd get actually officially

482
00:27:49,520 --> 00:27:52,919
Speaker 2: diagnosed as autistic. But something in me knew that I

483
00:27:53,040 --> 00:27:55,880
Speaker 2: needed the pressure of his body. I think it's called

484
00:27:55,960 --> 00:28:00,720
Speaker 2: proprioceptive feedback. That lots of autistic people like to be squeezed.

485
00:28:00,800 --> 00:28:05,000
Speaker 2: Temple Granted invented a hug machine fifty years ago because

486
00:28:05,040 --> 00:28:10,080
Speaker 2: she wanted that squeezing pressure, and something in my body

487
00:28:10,160 --> 00:28:14,520
Speaker 2: knew that I needed it. But more importantly, I knew

488
00:28:14,520 --> 00:28:18,159
Speaker 2: that Elliott would give it to me without me feeling

489
00:28:18,200 --> 00:28:21,679
Speaker 2: like shit about myself. In New Zealand with Lewis, if

490
00:28:21,720 --> 00:28:25,080
Speaker 2: I saw a cockroach and started crying, fifty percent of

491
00:28:25,160 --> 00:28:28,000
Speaker 2: my feelings in that movement would be, Oh my god,

492
00:28:28,000 --> 00:28:30,639
Speaker 2: he's gonna leave me. I'm so pathetic. What is wrong

493
00:28:30,680 --> 00:28:33,800
Speaker 2: with me that I can't handle a bug? He hates me.

494
00:28:33,880 --> 00:28:37,520
Speaker 2: I'm making his life a living hell. Whereas I can

495
00:28:37,560 --> 00:28:40,960
Speaker 2: be with Elliot and have a meltdown and have my

496
00:28:41,040 --> 00:28:44,160
Speaker 2: nervous system just regulated. And all the therapy talk, and

497
00:28:44,200 --> 00:28:46,440
Speaker 2: I can say, can you please lay on me? And

498
00:28:47,200 --> 00:28:49,000
Speaker 2: no part of me is going to think that he

499
00:28:49,760 --> 00:28:51,920
Speaker 2: is going to leave or that he won't love me

500
00:28:52,120 --> 00:28:56,560
Speaker 2: because of it. He's always offered himself to me without

501
00:28:56,720 --> 00:28:59,920
Speaker 2: any sort of judgment or expectation, and it's my favorite

502
00:29:00,000 --> 00:29:05,840
Speaker 2: thing about him. We'll be right back.

503
00:29:28,720 --> 00:29:32,000
Speaker 1: Marian and Elliot have a baby, a daughter named June.

504
00:29:33,040 --> 00:29:36,960
Speaker 1: After June is born, Marian experiences a very brief honeymoon

505
00:29:37,000 --> 00:29:42,440
Speaker 1: period of early motherhood, a state of absolute ease and tranquility.

506
00:29:43,000 --> 00:29:48,080
Speaker 1: But brief is the keyword here. Soon it becomes extremely hard,

507
00:29:48,800 --> 00:29:52,680
Speaker 1: because having a baby and then a toddler is nothing

508
00:29:52,720 --> 00:29:56,880
Speaker 1: if not a prescription for overstimulation. Marian thought the tech

509
00:29:56,920 --> 00:30:01,760
Speaker 1: offices in Silicon Valley were overstimulating, but now now there's this.

510
00:30:03,520 --> 00:30:06,240
Speaker 1: Can you tell me about the baby shark incident?

511
00:30:07,200 --> 00:30:11,720
Speaker 2: Oh boy, baby shark is the work of the devil.

512
00:30:11,880 --> 00:30:14,600
Speaker 2: I'm convinced. It is a terrible thing that the world

513
00:30:14,640 --> 00:30:17,680
Speaker 2: has given to parents. And my daughter was obsessed with it.

514
00:30:17,760 --> 00:30:20,000
Speaker 2: So she is, I don't know one and a half

515
00:30:20,080 --> 00:30:23,320
Speaker 2: or two, and she was very colicky and she had

516
00:30:23,360 --> 00:30:25,800
Speaker 2: a lot of big feelings as two year olds do,

517
00:30:26,520 --> 00:30:28,640
Speaker 2: and she's telling me that she wants to listen to

518
00:30:28,680 --> 00:30:31,920
Speaker 2: Baby Shark. I'm exhausted. I'm at the end of my rope.

519
00:30:32,000 --> 00:30:33,840
Speaker 2: I do not want to listen to baby Shark. I

520
00:30:33,920 --> 00:30:36,840
Speaker 2: can't do it. But she's screaming and crying and screaming

521
00:30:36,880 --> 00:30:39,680
Speaker 2: and crying, and so that is already over stimulation. And

522
00:30:39,760 --> 00:30:42,480
Speaker 2: at this point I have to decide which is worse,

523
00:30:42,760 --> 00:30:45,400
Speaker 2: the screaming of a baby or baby shark. And I

524
00:30:45,480 --> 00:30:48,320
Speaker 2: decide that baby Shark is not as bad, so I

525
00:30:48,360 --> 00:30:50,120
Speaker 2: put on Baby Shark. But she doesn't want to listen

526
00:30:50,160 --> 00:30:52,400
Speaker 2: to Baby Shark. Baby Shark is the worst. She starts

527
00:30:52,400 --> 00:30:54,680
Speaker 2: screaming and crying and screaming and crying. We go back

528
00:30:54,720 --> 00:30:58,200
Speaker 2: and forth like this seventeen times, and by this point,

529
00:30:58,600 --> 00:31:02,560
Speaker 2: the stimulation of not only the noise but the very

530
00:31:03,440 --> 00:31:07,800
Speaker 2: normal I think maternal. Am I doing this wrong? Am

531
00:31:07,840 --> 00:31:09,920
Speaker 2: I fucking up my kid? Because I will or will

532
00:31:09,960 --> 00:31:13,000
Speaker 2: not be playing Baby Shark. She's got plumb in her hair,

533
00:31:13,160 --> 00:31:16,000
Speaker 2: she's a wreck. I'm dreading bathtime because she hates getting

534
00:31:16,000 --> 00:31:19,160
Speaker 2: her hair washed. So there's seventeen different thoughts whirling in

535
00:31:19,200 --> 00:31:23,600
Speaker 2: my head. And because I don't know that I'm autistic,

536
00:31:23,720 --> 00:31:26,920
Speaker 2: that I get over stimulated extremely easily, and that the

537
00:31:27,040 --> 00:31:29,040
Speaker 2: parent that I am now would go into the other

538
00:31:29,120 --> 00:31:33,720
Speaker 2: room or tap out or put on noise canceling earphones.

539
00:31:33,880 --> 00:31:38,040
Speaker 2: I did not know this then at thirty, and I

540
00:31:38,120 --> 00:31:42,360
Speaker 2: completely lose it. She screaming about baby Shark. I grab

541
00:31:42,480 --> 00:31:44,400
Speaker 2: the plate that she's eating the plum off of, and

542
00:31:44,440 --> 00:31:48,640
Speaker 2: I throw it against the wall and it breaks. And I'm,

543
00:31:48,680 --> 00:31:50,680
Speaker 2: of course horrified by what I've done, and I run

544
00:31:50,720 --> 00:31:52,880
Speaker 2: into the other room and I tell Elliot, I need

545
00:31:52,920 --> 00:31:56,240
Speaker 2: you to take over, and he does. But that kind

546
00:31:56,280 --> 00:32:02,680
Speaker 2: of incident of ramping up the overstimulation happened multiple times,

547
00:32:02,680 --> 00:32:04,960
Speaker 2: and I would end up throwing things, just like I

548
00:32:05,040 --> 00:32:07,200
Speaker 2: did when I was in high school. Right, I didn't

549
00:32:07,240 --> 00:32:09,760
Speaker 2: know what was going on. The rage didn't end until

550
00:32:09,760 --> 00:32:12,960
Speaker 2: the mystery did, and because I didn't know what was happening,

551
00:32:13,400 --> 00:32:17,080
Speaker 2: I would force myself to endure it. All Moms, deal

552
00:32:17,120 --> 00:32:19,360
Speaker 2: with this. What is wrong with you that you can't

553
00:32:19,360 --> 00:32:22,560
Speaker 2: handle listening to baby Shark that you get so worked

554
00:32:22,600 --> 00:32:24,120
Speaker 2: up because your baby is screaming.

555
00:32:26,600 --> 00:32:30,520
Speaker 1: During this time, Marian was seeing therapists. This was nothing new.

556
00:32:31,080 --> 00:32:34,360
Speaker 1: By her early thirties, she had been diagnosed or improperly

557
00:32:34,400 --> 00:32:40,560
Speaker 1: diagnosed with anxiety depression, high sensitivity, probably Charett's. She'd been

558
00:32:40,600 --> 00:32:44,440
Speaker 1: prescribed a bunch of SSRIs and none of this was working.

559
00:32:45,160 --> 00:32:46,160
Speaker 1: None of it made sense.

560
00:32:48,240 --> 00:32:51,040
Speaker 2: Every time I'd go to see a therapist or a psychiatrist,

561
00:32:51,560 --> 00:32:54,440
Speaker 2: or do a group coaching, or do a yoga teacher training,

562
00:32:54,520 --> 00:32:58,400
Speaker 2: or my gratitude journaling or whatever it was, none of

563
00:32:58,440 --> 00:33:01,240
Speaker 2: it felt like it answered question of why I was

564
00:33:01,680 --> 00:33:05,920
Speaker 2: the way that I was. And the pills did not help.

565
00:33:06,080 --> 00:33:08,320
Speaker 2: They dampened it a little bit, But I never felt

566
00:33:08,320 --> 00:33:11,960
Speaker 2: that same relief that people talk about when they take antidepressants.

567
00:33:12,160 --> 00:33:14,880
Speaker 2: I never felt, oh my god, this weight has been lifted.

568
00:33:15,280 --> 00:33:17,960
Speaker 2: It made me ten percent more capable. And I just

569
00:33:18,080 --> 00:33:20,720
Speaker 2: kept going round and round in circles with different doctors

570
00:33:20,760 --> 00:33:23,440
Speaker 2: trying to get some sort of answer, and they never

571
00:33:23,440 --> 00:33:25,960
Speaker 2: could give me one. And why do you.

572
00:33:25,920 --> 00:33:31,720
Speaker 1: Think that is? Because you were, in fact, and had

573
00:33:31,760 --> 00:33:36,480
Speaker 1: been for a very long time, presenting with a whole

574
00:33:36,600 --> 00:33:41,880
Speaker 1: series of behaviors and symptoms that would point to an

575
00:33:41,920 --> 00:33:47,960
Speaker 1: autism diagnosis, even though you were extremely high functioning. What

576
00:33:48,040 --> 00:33:48,840
Speaker 1: do you attribute that to?

577
00:33:50,520 --> 00:33:52,719
Speaker 2: I wish I had an answer to this, Danny, because

578
00:33:53,480 --> 00:33:56,160
Speaker 2: I feel like I'm going through it again now as

579
00:33:56,160 --> 00:34:00,680
Speaker 2: an adult with other shit, sleep apnea, insulin resist, whatever

580
00:34:00,760 --> 00:34:02,760
Speaker 2: the thing is. It feels like anytime I go to

581
00:34:02,800 --> 00:34:06,920
Speaker 2: a doctor, there is oh, this person thinks it's this thing,

582
00:34:06,960 --> 00:34:08,840
Speaker 2: and know, this doctor thinks it's this thing, and no,

583
00:34:08,960 --> 00:34:11,880
Speaker 2: you have to try this. It's just it's endless. So

584
00:34:12,000 --> 00:34:13,240
Speaker 2: I don't have a good answer.

585
00:34:13,520 --> 00:34:15,440
Speaker 1: Well, I guess it was a bit of a leading question.

586
00:34:15,960 --> 00:34:19,799
Speaker 1: How much of this is gender bias. There's a statistic

587
00:34:20,360 --> 00:34:25,240
Speaker 1: that eighty percent of autistic girls remain undiagnosed by age eighteen.

588
00:34:26,000 --> 00:34:29,319
Speaker 1: That would certainly not be true of autistic boys. And

589
00:34:29,360 --> 00:34:32,760
Speaker 1: then you have the hysteria piece of it. Women presenting

590
00:34:32,760 --> 00:34:36,080
Speaker 1: with these symptoms. In another century it would have been

591
00:34:36,080 --> 00:34:39,600
Speaker 1: called like neurasthenia. You know, it's just overly tensative.

592
00:34:40,560 --> 00:34:44,360
Speaker 2: Yeah, we don't love women just in general. But I

593
00:34:44,400 --> 00:34:47,359
Speaker 2: feel like, especially doctors don't love women. I know that's

594
00:34:47,400 --> 00:34:49,520
Speaker 2: a terrible thing to say, and I've luckily had some

595
00:34:49,640 --> 00:34:53,320
Speaker 2: lovely doctors, but I've also had some terrible doctors. And yeah,

596
00:34:53,440 --> 00:34:57,880
Speaker 2: eighty percent, eighty percent of women remain undiagnosed by the

597
00:34:57,920 --> 00:35:02,200
Speaker 2: time they're eighteen. Autistic women, which means the vast majority

598
00:35:02,200 --> 00:35:04,399
Speaker 2: of us are getting diagnosed the way that I did

599
00:35:04,600 --> 00:35:08,120
Speaker 2: in our thirties, forties, sixties. I get emails every day

600
00:35:08,160 --> 00:35:12,640
Speaker 2: from women of all decades, but all adults who didn't

601
00:35:12,640 --> 00:35:16,040
Speaker 2: find out they were autistic until much later. All of

602
00:35:16,080 --> 00:35:20,279
Speaker 2: our media representation about autism is focused on boys. Right.

603
00:35:20,360 --> 00:35:22,920
Speaker 2: It's only in the past couple of years that we've

604
00:35:22,960 --> 00:35:26,640
Speaker 2: started featuring autistic women and girls in movies and TV.

605
00:35:27,320 --> 00:35:29,160
Speaker 2: But for the most part, we thought it was a

606
00:35:29,160 --> 00:35:33,000
Speaker 2: boys disorder. It's completely bonkers to me. And it's not

607
00:35:33,040 --> 00:35:36,160
Speaker 2: just autism, right, It's not even just developmental disorders. Right.

608
00:35:36,560 --> 00:35:40,840
Speaker 2: Women are diagnosed later than men in over seven hundred

609
00:35:40,920 --> 00:35:45,000
Speaker 2: different conditions. Right. Our leading cause of death for women

610
00:35:45,239 --> 00:35:49,720
Speaker 2: is cardiovascular disease. And yet all of the quote unquote

611
00:35:49,719 --> 00:35:52,080
Speaker 2: symptoms of heart attacks that we see in the media

612
00:35:52,560 --> 00:35:56,600
Speaker 2: are the symptoms that men experience. A lot of pharmaceuticals

613
00:35:56,600 --> 00:36:00,280
Speaker 2: aren't even tested on women. Our lab rats are primarily made.

614
00:36:00,480 --> 00:36:03,600
Speaker 2: So it makes sense to me, given all of the

615
00:36:03,680 --> 00:36:08,439
Speaker 2: data about medicine and women, that you're going to tell

616
00:36:08,440 --> 00:36:10,759
Speaker 2: me that I'm anxious and you're not actually going to

617
00:36:10,800 --> 00:36:13,080
Speaker 2: tell me what I really have. And I have a

618
00:36:13,160 --> 00:36:15,960
Speaker 2: number of stories in the book of women with cancer

619
00:36:16,400 --> 00:36:18,480
Speaker 2: and blood clots who went to the doctor and were

620
00:36:18,480 --> 00:36:21,279
Speaker 2: told that they were just stressed instead of getting diagnosed.

621
00:36:21,480 --> 00:36:23,480
Speaker 2: So it makes sense that when I go to my

622
00:36:23,560 --> 00:36:26,960
Speaker 2: therapist after having a baby and I say I'm throwing

623
00:36:27,000 --> 00:36:30,040
Speaker 2: plates against the wall, what's wrong with me? She says,

624
00:36:30,120 --> 00:36:33,360
Speaker 2: welcome to motherhood. Being a parent is really hard. She

625
00:36:33,480 --> 00:36:35,160
Speaker 2: does not say the word autism to me.

626
00:36:38,840 --> 00:36:41,799
Speaker 1: When June is four and Marian is around thirty, she

627
00:36:41,880 --> 00:36:44,759
Speaker 1: goes with a friend to see one of her favorite comedians,

628
00:36:45,000 --> 00:36:48,880
Speaker 1: Hannah Gatsby, who themselves had been diagnosed with autism as

629
00:36:48,880 --> 00:36:51,799
Speaker 1: an adult and had made this a part of their act.

630
00:36:53,320 --> 00:36:57,200
Speaker 2: So Hannah Gatsby, who is just a gift to all

631
00:36:57,239 --> 00:36:59,880
Speaker 2: of us, was performing in San Francisco, and I go

632
00:37:00,280 --> 00:37:03,239
Speaker 2: to see their show with a friend and someone in

633
00:37:03,280 --> 00:37:07,480
Speaker 2: the audience shouts out, I love you, Hannah, and Hannah's

634
00:37:07,480 --> 00:37:12,319
Speaker 2: stumbles and you can see that they're visibly upset. And

635
00:37:12,360 --> 00:37:15,319
Speaker 2: I've seen comedians it wasn't even heckling. The audience member

636
00:37:15,360 --> 00:37:18,160
Speaker 2: was saying something kind, But it was the first time

637
00:37:18,320 --> 00:37:22,040
Speaker 2: I'd seen a live performer be jarred by something that

638
00:37:22,200 --> 00:37:25,600
Speaker 2: I would have been jarred by if I hear a noise,

639
00:37:26,239 --> 00:37:28,360
Speaker 2: it'll stop me and it'll take a minute for me

640
00:37:28,440 --> 00:37:31,920
Speaker 2: to get back on track. I can't filter out the

641
00:37:32,000 --> 00:37:36,600
Speaker 2: outside world. And Hannah was late diagnosed artistic, and they

642
00:37:36,640 --> 00:37:39,440
Speaker 2: say to the audience member, Hannah goes, can you please

643
00:37:39,520 --> 00:37:41,840
Speaker 2: just not do that? It really makes me lose my place.

644
00:37:42,200 --> 00:37:44,920
Speaker 2: I can't have anyone talking to me, just basically be quiet.

645
00:37:45,680 --> 00:37:49,000
Speaker 2: It just filled me with recognition. I felt like I

646
00:37:49,120 --> 00:37:53,440
Speaker 2: was seeing myself reflected in Hannah. I was really impressed

647
00:37:53,480 --> 00:37:56,320
Speaker 2: that they set a boundary in front of thousands of people.

648
00:37:56,360 --> 00:37:58,480
Speaker 2: I thought that was really cool that they could just

649
00:37:58,640 --> 00:38:02,200
Speaker 2: ask for what they needed and get it. Nobody was upset,

650
00:38:02,320 --> 00:38:05,560
Speaker 2: nobody noticed it. It didn't change anyone's perspective of the show.

651
00:38:06,520 --> 00:38:09,680
Speaker 2: And so I went home and I did not google

652
00:38:09,800 --> 00:38:12,719
Speaker 2: am I autistic. It would take another year for me

653
00:38:13,360 --> 00:38:16,920
Speaker 2: for those pieces to click into place. But it was

654
00:38:17,000 --> 00:38:22,319
Speaker 2: the first time I really felt myself, the whole of myself,

655
00:38:23,160 --> 00:38:28,239
Speaker 2: reflected in someone else. I felt, oh, Hannah's experience of

656
00:38:28,280 --> 00:38:31,920
Speaker 2: the world is also my experience of the world, and

657
00:38:31,960 --> 00:38:34,839
Speaker 2: it made me feel less weird. It did make me

658
00:38:34,880 --> 00:38:37,719
Speaker 2: feel less broken. And they did during their set talk

659
00:38:37,760 --> 00:38:40,400
Speaker 2: a lot about their autism diagnosis and what it felt like,

660
00:38:40,480 --> 00:38:43,880
Speaker 2: and they described it as being the only sober person

661
00:38:43,960 --> 00:38:46,480
Speaker 2: in a room full of drunk people, which I loved

662
00:38:46,520 --> 00:38:49,640
Speaker 2: and find very relatable. And so that was that Hannah

663
00:38:49,719 --> 00:38:53,359
Speaker 2: Show was the first puzzle piece clicking into place over

664
00:38:53,400 --> 00:38:56,560
Speaker 2: the next year before my autism diagnosis.

665
00:38:57,200 --> 00:38:59,759
Speaker 1: And it takes you a bit to get to that diagnosis.

666
00:39:00,080 --> 00:39:04,080
Speaker 1: After the Hannah Show, you at some point bring up

667
00:39:04,080 --> 00:39:07,759
Speaker 1: to the therapist you're then seeing, I wonder what do

668
00:39:07,760 --> 00:39:12,440
Speaker 1: you think about autism, and that therapist is quite dismissive

669
00:39:13,000 --> 00:39:16,200
Speaker 1: and pretty much says to you, because you're married and

670
00:39:16,239 --> 00:39:20,480
Speaker 1: you have a child, and you're charming, you can't be autistic.

671
00:39:21,120 --> 00:39:24,360
Speaker 1: And one of the things that you write that I

672
00:39:24,400 --> 00:39:27,960
Speaker 1: particularly highlighted that I love is I learned that autistic

673
00:39:28,040 --> 00:39:32,360
Speaker 1: girls are more likely to wear masks because all girls

674
00:39:32,520 --> 00:39:35,320
Speaker 1: are forced to wear them from the moment we open

675
00:39:35,400 --> 00:39:39,280
Speaker 1: our eyes. The only difference is what the mask is hiding.

676
00:39:39,680 --> 00:39:43,200
Speaker 1: So there's something that is so it's incredibly relatable, but

677
00:39:43,239 --> 00:39:47,040
Speaker 1: it also is what confused your therapist, who sounded like

678
00:39:47,120 --> 00:39:51,439
Speaker 1: a highly trained therapist who just was missing the boat

679
00:39:51,520 --> 00:39:54,719
Speaker 1: on this and had all sorts of other diagnoses for you.

680
00:39:54,840 --> 00:39:59,879
Speaker 1: But dismissed this, And something happened there which I would

681
00:39:59,880 --> 00:40:02,640
Speaker 1: love you to talk a little bit about, which was that,

682
00:40:03,160 --> 00:40:08,800
Speaker 1: for the first time, something tells you your own voice

683
00:40:09,480 --> 00:40:13,640
Speaker 1: overrides what she's saying, something tells you that she's wrong.

684
00:40:14,040 --> 00:40:16,880
Speaker 2: Yeah, it really is. And I think every woman, non

685
00:40:16,960 --> 00:40:20,560
Speaker 2: binary person can probably relate to this, which is, I

686
00:40:20,640 --> 00:40:24,920
Speaker 2: feel so overwhelmed in front of experts. I often just

687
00:40:24,960 --> 00:40:28,600
Speaker 2: feel like, Oh, they know better than me, especially doctors,

688
00:40:28,600 --> 00:40:31,799
Speaker 2: people with a lot of education. Who am I to

689
00:40:32,280 --> 00:40:37,680
Speaker 2: question this? She's right, I'm wrong. I felt so stupid

690
00:40:37,880 --> 00:40:41,000
Speaker 2: in that appointment. Oh you're charming. Autistic people have a

691
00:40:41,000 --> 00:40:43,640
Speaker 2: hard time living a normal life. That's what she said.

692
00:40:44,160 --> 00:40:46,279
Speaker 2: Of course, it didn't occur to me until later, and

693
00:40:46,280 --> 00:40:48,799
Speaker 2: this is what made me think, wait a minute, like,

694
00:40:49,120 --> 00:40:51,919
Speaker 2: I don't think she knows what she's talking about in

695
00:40:51,960 --> 00:40:55,800
Speaker 2: this particular area. That made me realize for the first

696
00:40:55,800 --> 00:40:58,600
Speaker 2: time that this one expert was not the beal and

697
00:40:58,760 --> 00:41:01,640
Speaker 2: all of my own body. And by this point I'm

698
00:41:01,719 --> 00:41:05,600
Speaker 2: thirty four. I had been dismissed so many times by doctors.

699
00:41:06,120 --> 00:41:09,960
Speaker 2: I felt powerful, Oh, I can talk to someone else.

700
00:41:10,320 --> 00:41:12,520
Speaker 2: I don't think this person has the answer. I need

701
00:41:12,560 --> 00:41:15,680
Speaker 2: to find someone who knows more about this, and then

702
00:41:15,960 --> 00:41:18,520
Speaker 2: it takes you a bit, but you do yes. I

703
00:41:18,640 --> 00:41:25,040
Speaker 2: called pretty much every developmental kind of clinic autism clinic

704
00:41:25,120 --> 00:41:27,920
Speaker 2: in Portland, and some of them hung up on me.

705
00:41:28,280 --> 00:41:30,920
Speaker 2: I had a couple people be just really surprised that

706
00:41:31,000 --> 00:41:34,000
Speaker 2: I was calling for myself and not my child. The

707
00:41:34,080 --> 00:41:39,320
Speaker 2: autism kind of diagnostic community is very much focused on children.

708
00:41:39,920 --> 00:41:42,520
Speaker 2: The assumption is that if you've made it to adulthood,

709
00:41:42,560 --> 00:41:45,560
Speaker 2: you're fine, that you don't need to know. There's no

710
00:41:45,719 --> 00:41:49,440
Speaker 2: reason to know. If you're not a student who needs accommodations,

711
00:41:49,960 --> 00:41:54,279
Speaker 2: or in an office and need accommodations, then why would

712
00:41:54,320 --> 00:41:56,239
Speaker 2: you need this information. So it was very hard for

713
00:41:56,280 --> 00:41:59,320
Speaker 2: me to find someone, but I did a lot of digging, honestly,

714
00:41:59,400 --> 00:42:03,239
Speaker 2: primarily on social media, just looking at other autistic women

715
00:42:03,239 --> 00:42:05,759
Speaker 2: who've been diagnosed late in life and trying to find

716
00:42:05,760 --> 00:42:08,799
Speaker 2: out who diagnosed them. And there are a number of

717
00:42:09,360 --> 00:42:14,520
Speaker 2: people that are specialists in autism who do adult assessments.

718
00:42:14,920 --> 00:42:17,040
Speaker 2: They are few and far between, but they do exist,

719
00:42:17,120 --> 00:42:20,000
Speaker 2: and so I lucked into finding doctor Marsh. She is

720
00:42:20,120 --> 00:42:23,320
Speaker 2: local to me, which is wild, and she spent thirty

721
00:42:23,400 --> 00:42:28,319
Speaker 2: years diagnosing children in California and Oregon as part of

722
00:42:28,360 --> 00:42:31,440
Speaker 2: the school system, So she did a lot of children's assessments.

723
00:42:32,080 --> 00:42:35,840
Speaker 2: And as she got older and learned more about the

724
00:42:35,840 --> 00:42:40,560
Speaker 2: people that were getting missed, primarily women and other marginalized genders.

725
00:42:40,800 --> 00:42:44,120
Speaker 2: Black and brown people also get missed, she realized that

726
00:42:44,200 --> 00:42:49,719
Speaker 2: she needed to be able to assess masked presentation. So

727
00:42:49,760 --> 00:42:53,640
Speaker 2: the autism that we hide. Doctor marsh was like, okay,

728
00:42:53,640 --> 00:42:56,200
Speaker 2: but what about the girls who are biting the inside

729
00:42:56,200 --> 00:42:59,680
Speaker 2: of their cheeks or flaring their nostrils and only talking

730
00:42:59,680 --> 00:43:03,480
Speaker 2: about the Spice Girls or Puerto Rico? What about them? Right?

731
00:43:03,640 --> 00:43:06,520
Speaker 2: Because those they are not represented in the media. We

732
00:43:06,840 --> 00:43:08,920
Speaker 2: don't talk about them, and we miss them. And so

733
00:43:09,000 --> 00:43:13,120
Speaker 2: I found her and she was amazing, and she had

734
00:43:13,880 --> 00:43:17,080
Speaker 2: a ton of tests, actually, and I think she did

735
00:43:17,120 --> 00:43:21,120
Speaker 2: about five of them. I think two or three were

736
00:43:21,320 --> 00:43:24,520
Speaker 2: the official AQ tests that a lot of doctors use.

737
00:43:25,000 --> 00:43:27,239
Speaker 2: And then because she's been doing this for thirty years,

738
00:43:27,239 --> 00:43:30,120
Speaker 2: she had developed her own tests and the ways that

739
00:43:30,239 --> 00:43:34,000
Speaker 2: she sees autism be hidden by some people after many

740
00:43:34,080 --> 00:43:36,560
Speaker 2: years of trying to hide, and so she has her

741
00:43:36,600 --> 00:43:39,480
Speaker 2: own tests. And we did two over zoom where she

742
00:43:39,520 --> 00:43:42,759
Speaker 2: would observe me and then ask me questions, and then

743
00:43:42,800 --> 00:43:46,440
Speaker 2: by the third session we had the big reveal. But

744
00:43:46,520 --> 00:43:49,319
Speaker 2: by that point, after talking to her for so long

745
00:43:49,400 --> 00:43:52,640
Speaker 2: and reading so many memoirs of other autistic women, I

746
00:43:52,719 --> 00:43:57,000
Speaker 2: knew already, and so her saying you're autistic. I wouldn't

747
00:43:57,000 --> 00:44:00,000
Speaker 2: say it was anticlimactic, but at that point there was

748
00:44:00,160 --> 00:44:01,160
Speaker 2: no doubt in my mind.

749
00:44:01,640 --> 00:44:02,839
Speaker 1: It was a confirmation.

750
00:44:03,520 --> 00:44:06,440
Speaker 2: Yeah, exactly. There's also a moment.

751
00:44:06,160 --> 00:44:08,680
Speaker 1: With doctor Marsh, whare the two of you talk about

752
00:44:09,160 --> 00:44:12,920
Speaker 1: whether to bring in your parents and you mull that

753
00:44:13,160 --> 00:44:15,759
Speaker 1: because there's a part of you other things, well, maybe

754
00:44:15,800 --> 00:44:19,480
Speaker 1: they would remember better than I would my early childhood,

755
00:44:19,560 --> 00:44:23,160
Speaker 1: and doctor Marsh says, I trust you. The way you

756
00:44:23,239 --> 00:44:28,239
Speaker 1: see yourself matters, and that was a revolutionary thing for you.

757
00:44:29,640 --> 00:44:33,759
Speaker 2: Yeah, Like, when are we ever told, especially by medical professionals,

758
00:44:34,280 --> 00:44:38,440
Speaker 2: I trust you and your interpretation of yourself. I trust

759
00:44:38,800 --> 00:44:44,520
Speaker 2: that your breathing issues, that your chest pain, that your anxiety,

760
00:44:44,680 --> 00:44:48,520
Speaker 2: that your sensory overwhelmed is real. When are we ever

761
00:44:48,680 --> 00:44:51,840
Speaker 2: told that? Truly, it was one of the most emotional

762
00:44:51,840 --> 00:44:54,600
Speaker 2: moments of my life to be told I don't need

763
00:44:54,640 --> 00:44:57,080
Speaker 2: to ask anybody else, I don't need to talk to

764
00:44:57,120 --> 00:44:59,759
Speaker 2: my parents, I don't need to bring in my f

765
00:45:00,000 --> 00:45:03,960
Speaker 2: fourth grade teacher, my experience of the world is valid,

766
00:45:04,160 --> 00:45:06,239
Speaker 2: and doctor marsh took that seriously.

767
00:45:10,120 --> 00:45:13,640
Speaker 1: Marianne's older brother is getting married, and a family wedding

768
00:45:13,760 --> 00:45:17,760
Speaker 1: is the definition of a lot. But by now Marianne

769
00:45:17,760 --> 00:45:20,839
Speaker 1: has shared her diagnosis with her mother, and her mother

770
00:45:20,960 --> 00:45:26,560
Speaker 1: surprises her with an extraordinarily empathic response. Her mother apologizes

771
00:45:26,920 --> 00:45:30,080
Speaker 1: for not having seen or understood the signs in Marianne's childhood.

772
00:45:30,680 --> 00:45:33,680
Speaker 1: That goes further and asks what can I do now?

773
00:45:34,120 --> 00:45:38,040
Speaker 1: What do you need? This makes it infinitely more possible

774
00:45:38,320 --> 00:45:42,640
Speaker 1: for marian to be herself now she has language tactics,

775
00:45:42,960 --> 00:45:45,040
Speaker 1: a safety net, a map.

776
00:45:46,920 --> 00:45:50,000
Speaker 2: I was shocked. My mother and I butt heads a lot.

777
00:45:50,160 --> 00:45:52,520
Speaker 2: We're very similar in a lot of ways and very

778
00:45:52,520 --> 00:45:54,840
Speaker 2: different in a lot of ways, and they don't often

779
00:45:54,920 --> 00:45:59,239
Speaker 2: line up, so most of our conversations are argumentative in

780
00:45:59,320 --> 00:46:03,040
Speaker 2: some way. It's really unpleasant, And it was really the

781
00:46:03,080 --> 00:46:05,520
Speaker 2: first time I felt like I didn't have to defend

782
00:46:05,640 --> 00:46:09,360
Speaker 2: myself or that she was really curious about my experience

783
00:46:09,400 --> 00:46:13,560
Speaker 2: without trying to fix me, but instead here where I

784
00:46:13,640 --> 00:46:16,360
Speaker 2: was coming from, and see me for who I was

785
00:46:16,440 --> 00:46:20,120
Speaker 2: and not who she wants me to be, and It

786
00:46:20,200 --> 00:46:23,239
Speaker 2: really was a complete shift in our relationship, and my

787
00:46:23,360 --> 00:46:26,200
Speaker 2: parents just moved across the country to be near me.

788
00:46:26,680 --> 00:46:29,040
Speaker 2: If you had asked me ten years ago whether I

789
00:46:29,080 --> 00:46:31,640
Speaker 2: wanted to live twenty minutes for my parents, I would

790
00:46:31,640 --> 00:46:34,480
Speaker 2: have laughed in your face. This is a shock to

791
00:46:34,520 --> 00:46:36,800
Speaker 2: me that I was okay with this, and it really

792
00:46:36,840 --> 00:46:39,759
Speaker 2: is a testament to the ways that my mom has

793
00:46:39,800 --> 00:46:43,640
Speaker 2: been able to learn who I am as an adult.

794
00:46:43,840 --> 00:46:47,000
Speaker 2: And really she has been so accommodating to me. She

795
00:46:47,760 --> 00:46:50,880
Speaker 2: doesn't tease me anymore for needing to be inside a

796
00:46:50,920 --> 00:46:54,760
Speaker 2: lot quiet, reading a book, needing an app She will

797
00:46:54,800 --> 00:46:57,799
Speaker 2: ask if I need to leave a loud place. Right.

798
00:46:57,880 --> 00:47:00,840
Speaker 2: She escorted me out of this pizza restaurant. There was

799
00:47:00,920 --> 00:47:03,400
Speaker 2: seventeen of us at the table and I'm having a meltdown,

800
00:47:04,160 --> 00:47:08,279
Speaker 2: And instead of telling me, oh, get your head out

801
00:47:08,320 --> 00:47:12,279
Speaker 2: of your hands, you're being rude, instead she asked, can

802
00:47:12,320 --> 00:47:15,040
Speaker 2: I take you home. I know a lot of autistic

803
00:47:15,080 --> 00:47:18,080
Speaker 2: women who have not had this shift with their mothers,

804
00:47:18,400 --> 00:47:20,640
Speaker 2: and I feel very lucky that I did. And a

805
00:47:20,640 --> 00:47:22,880
Speaker 2: big part of it is just her willingness to listen

806
00:47:23,440 --> 00:47:27,040
Speaker 2: and learn. She's read all the autism books now, it's amazing.

807
00:47:28,200 --> 00:47:32,000
Speaker 1: The label Marianne finally received liberated her in countless ways

808
00:47:32,440 --> 00:47:35,920
Speaker 1: connected her more deeply to her family and herself. But

809
00:47:36,040 --> 00:47:40,920
Speaker 1: labels can also be constricting, confusing, even reductive or restrictive.

810
00:47:42,000 --> 00:47:46,279
Speaker 1: Shortly after doctor Marsh gave Marianne her diagnosis, she wrote

811
00:47:46,320 --> 00:47:50,160
Speaker 1: about her experience on a popular online site. Then she

812
00:47:50,280 --> 00:47:54,040
Speaker 1: did what many writers avoid. She read the comments.

813
00:47:55,880 --> 00:47:59,120
Speaker 2: We were not designed for this much information about our work.

814
00:47:59,200 --> 00:48:00,920
Speaker 1: No talk about over stimulating.

815
00:48:01,280 --> 00:48:04,560
Speaker 2: Yeah, and a lot of the comments, the vast majority,

816
00:48:05,040 --> 00:48:08,320
Speaker 2: Like all comments, the vast majority were positive and lovely,

817
00:48:08,440 --> 00:48:11,759
Speaker 2: and so many different stories of women who'd been late

818
00:48:11,840 --> 00:48:17,520
Speaker 2: diagnosed with autism, adhd ocd endomitriosis, postpartum psychosis. Really, so

819
00:48:17,640 --> 00:48:20,960
Speaker 2: many incredible stories from women in the comments. And the

820
00:48:21,440 --> 00:48:23,759
Speaker 2: ten to twenty people who decided that they hated me.

821
00:48:24,080 --> 00:48:27,680
Speaker 2: It was both awful and I also really empathize with them.

822
00:48:27,760 --> 00:48:30,560
Speaker 2: I think the vast majority of them are parenting autistic

823
00:48:30,640 --> 00:48:34,640
Speaker 2: children who look or act so much more quote unquote

824
00:48:34,719 --> 00:48:37,600
Speaker 2: severe than me. And that's a whole other topic for

825
00:48:37,640 --> 00:48:41,520
Speaker 2: another day. But I get that it's probably really hard

826
00:48:41,640 --> 00:48:45,920
Speaker 2: if you're wrestling with this idea that you will be

827
00:48:46,000 --> 00:48:48,120
Speaker 2: taking care of your child for the rest of your life,

828
00:48:48,440 --> 00:48:51,000
Speaker 2: or maybe your child will never get married or have

829
00:48:51,120 --> 00:48:54,919
Speaker 2: children or have a job. I understand that to look

830
00:48:54,960 --> 00:48:57,759
Speaker 2: at someone like me who's married and has a child

831
00:48:57,840 --> 00:49:00,160
Speaker 2: and is charming and owns a house, right, that those

832
00:49:00,200 --> 00:49:05,480
Speaker 2: things feel fucking irritating and not fair. And so I

833
00:49:05,520 --> 00:49:07,440
Speaker 2: think part of the reason it was so hard to

834
00:49:07,480 --> 00:49:09,759
Speaker 2: read those comments just because I do get it to

835
00:49:09,880 --> 00:49:12,640
Speaker 2: a certain extent. And I think when you write about anything,

836
00:49:13,480 --> 00:49:16,320
Speaker 2: especially if you're a memoorist or an essays, you're writing

837
00:49:16,360 --> 00:49:19,800
Speaker 2: these really personal stories and it's not I wasn't writing

838
00:49:19,800 --> 00:49:23,280
Speaker 2: about their children or their experience. I was writing about mine.

839
00:49:23,320 --> 00:49:24,960
Speaker 2: And I think it took me a long time to

840
00:49:25,040 --> 00:49:28,799
Speaker 2: realize that. I think the kind of overarching comment that

841
00:49:28,840 --> 00:49:34,520
Speaker 2: people made is, well, if she's autistic and Rainman is autistic,

842
00:49:35,200 --> 00:49:37,680
Speaker 2: how can those two things be the same. What is

843
00:49:37,719 --> 00:49:40,560
Speaker 2: even the point? We shouldn't have to label people, stop

844
00:49:40,680 --> 00:49:44,239
Speaker 2: labeling everything. Let's just accept everyone for who they are.

845
00:49:44,880 --> 00:49:47,439
Speaker 2: And I guess I understand that, and like I'd love

846
00:49:47,480 --> 00:49:49,880
Speaker 2: for all of us to feel free to be you

847
00:49:49,960 --> 00:49:53,040
Speaker 2: and me, and in a perfect world we wouldn't need labels.

848
00:49:53,080 --> 00:49:55,239
Speaker 2: But I don't know what to tell you or her

849
00:49:55,520 --> 00:49:58,280
Speaker 2: that it really sucks to go through your whole life

850
00:49:58,280 --> 00:50:01,280
Speaker 2: feeling on the outside of everyone, like I just watched

851
00:50:01,320 --> 00:50:05,480
Speaker 2: all my friends get thrown baby showers and hold down

852
00:50:05,520 --> 00:50:08,960
Speaker 2: a job for more than six months and have friends

853
00:50:09,000 --> 00:50:11,719
Speaker 2: and go out after work, and to just be constantly

854
00:50:11,760 --> 00:50:14,560
Speaker 2: hammering myself with this idea that I was broken and

855
00:50:14,680 --> 00:50:18,880
Speaker 2: less than I really cannot express what a relief it

856
00:50:19,080 --> 00:50:22,640
Speaker 2: was to be given a reason why, and to not

857
00:50:22,680 --> 00:50:24,640
Speaker 2: only be given a reason why, but to be given

858
00:50:24,680 --> 00:50:28,439
Speaker 2: a community, a built in community of neurodivergent women who

859
00:50:28,520 --> 00:50:32,160
Speaker 2: also experienced the world that I did. And essentially those

860
00:50:32,200 --> 00:50:34,319
Speaker 2: commenters were trying to take that away from me and

861
00:50:34,360 --> 00:50:36,880
Speaker 2: trying to take that away from other autistic people that

862
00:50:37,000 --> 00:50:40,160
Speaker 2: for whatever reason, we shouldn't get to have this information

863
00:50:40,200 --> 00:50:43,000
Speaker 2: about ourselves. It should be kept secret. At the time,

864
00:50:43,280 --> 00:50:44,520
Speaker 2: it was very hurtful.

865
00:50:45,040 --> 00:50:50,720
Speaker 1: It caused you briefly to doubt yourself, like to feel

866
00:50:50,719 --> 00:50:52,600
Speaker 1: like you needed to get a second opinion.

867
00:50:53,160 --> 00:50:55,359
Speaker 2: I went through the whole process again. I was like, Oh,

868
00:50:55,640 --> 00:51:00,560
Speaker 2: maybe they're right, maybe I'm not autistic, maybe marsh got

869
00:51:00,560 --> 00:51:04,280
Speaker 2: it wrong. So I spent another one thousand dollars trying

870
00:51:04,320 --> 00:51:07,560
Speaker 2: to get another answer. So I found another specialist outside

871
00:51:07,560 --> 00:51:09,600
Speaker 2: of the United States, so I could get this more

872
00:51:09,719 --> 00:51:13,759
Speaker 2: like unbiased perspective. I didn't tell her about my first diagnosis.

873
00:51:13,800 --> 00:51:16,640
Speaker 2: I did all the tests, I did a huge survey,

874
00:51:17,160 --> 00:51:20,600
Speaker 2: long interview with her, and it was the same thing. Yes, absolutely,

875
00:51:20,600 --> 00:51:24,240
Speaker 2: you're autistic. It was definitely validating to do it again

876
00:51:24,280 --> 00:51:26,760
Speaker 2: and to feel like I had this armor. It's helpful

877
00:51:26,840 --> 00:51:30,479
Speaker 2: to have two diagnoses, but it was unnecessary. I knew

878
00:51:30,480 --> 00:51:32,880
Speaker 2: what I knew about myself, and it's one of the

879
00:51:32,880 --> 00:51:36,840
Speaker 2: reasons I don't really use the internet anymore because it's minefield.

880
00:51:40,080 --> 00:51:42,840
Speaker 1: It has now been four years since her diagnosis, and

881
00:51:42,880 --> 00:51:46,919
Speaker 1: in that time life has vastly improved from Marian, as

882
00:51:46,920 --> 00:51:49,040
Speaker 1: she puts it, it's like night and day.

883
00:51:50,400 --> 00:51:53,200
Speaker 2: So June is eight and she's about to finish second grade,

884
00:51:53,239 --> 00:51:56,479
Speaker 2: which is so sad. She's so big. She talks about

885
00:51:56,480 --> 00:51:59,000
Speaker 2: my autism all the time. She tells everyone she'll be

886
00:51:59,040 --> 00:52:02,720
Speaker 2: at school and I have the unit on neurodivergence, because

887
00:52:02,719 --> 00:52:04,600
Speaker 2: of course they do. We live in Portland, Oregon, and

888
00:52:04,600 --> 00:52:07,520
Speaker 2: they all have their little fidget spinners and June as well.

889
00:52:07,520 --> 00:52:09,799
Speaker 2: My mommy's autistic, and she knows all about it, and

890
00:52:09,840 --> 00:52:13,080
Speaker 2: she talks about her own needs and her own accommodations

891
00:52:13,120 --> 00:52:17,799
Speaker 2: that she wants, and it's amazing. And I work from home,

892
00:52:18,480 --> 00:52:21,520
Speaker 2: I write, I don't have to talk to anyone, and

893
00:52:21,560 --> 00:52:24,000
Speaker 2: it's great. I have a door that closes. There's no

894
00:52:24,200 --> 00:52:29,399
Speaker 2: like frat party beers after work. I really don't think

895
00:52:29,400 --> 00:52:32,680
Speaker 2: about being autistic anymore. It doesn't cross my mind that often.

896
00:52:33,120 --> 00:52:37,040
Speaker 2: I honestly rarely even talk about it anymore, because my

897
00:52:37,200 --> 00:52:42,280
Speaker 2: whole life has been built inside these fences. I think

898
00:52:42,800 --> 00:52:47,719
Speaker 2: that keeps me from rarely being overstimulated. I have the

899
00:52:47,760 --> 00:52:50,160
Speaker 2: support system that I need to take care of me.

900
00:52:51,000 --> 00:52:54,360
Speaker 2: I can be a better partner and a better mom

901
00:52:54,440 --> 00:52:56,880
Speaker 2: and a better writer. Now that I have this information,

902
00:52:57,560 --> 00:53:00,440
Speaker 2: it's just been so freeing to talk about it without

903
00:53:00,480 --> 00:53:03,560
Speaker 2: being twisted up in knots about it. It also helps

904
00:53:03,600 --> 00:53:05,680
Speaker 2: that the world knows more about autism now that it's

905
00:53:05,719 --> 00:53:08,560
Speaker 2: actually not that strange. And I meet women at least

906
00:53:08,600 --> 00:53:10,640
Speaker 2: once a week someone tells me that they're autistic, and

907
00:53:10,680 --> 00:53:14,120
Speaker 2: it does feel very much. Especially in Portland, Oregon, part

908
00:53:14,239 --> 00:53:17,600
Speaker 2: of our language, the way that we talk about neurodivergence,

909
00:53:17,640 --> 00:53:21,680
Speaker 2: feels way different, and I think that's just impacted the

910
00:53:21,719 --> 00:53:27,120
Speaker 2: ease of my life a lot.

911
00:53:27,640 --> 00:53:32,880
Speaker 1: Here's Marianne reading one last passage from her beautiful, important memoir.

912
00:53:35,080 --> 00:53:38,520
Speaker 2: At thirty four, I discovered that no power grows while

913
00:53:38,560 --> 00:53:42,239
Speaker 2: cowering in the dark. Learning and sharing the word autism

914
00:53:42,320 --> 00:53:47,320
Speaker 2: would heal decades of wounds, dozens of relationships, a lifetime

915
00:53:47,360 --> 00:53:51,600
Speaker 2: of self hatred. Six letters gave language to the terrain

916
00:53:51,680 --> 00:53:54,920
Speaker 2: of my life. I could read the original transcript of

917
00:53:54,960 --> 00:53:58,480
Speaker 2: myself now a palimpsest of every person I'd ever tried

918
00:53:58,520 --> 00:54:03,120
Speaker 2: to be. The Centers for Disease Control and Prevention estimates

919
00:54:03,120 --> 00:54:07,120
Speaker 2: that about one in thirty six people is autistic. That said,

920
00:54:07,200 --> 00:54:10,720
Speaker 2: we know autism goes undiagnosed and marginalized genders and people

921
00:54:10,719 --> 00:54:13,160
Speaker 2: of color, so we can assume this number to be

922
00:54:13,200 --> 00:54:17,839
Speaker 2: significantly higher. Women like me are being diagnosed every day.

923
00:54:18,800 --> 00:54:22,560
Speaker 2: We are everywhere, hiding in plain sight, wearing the masks

924
00:54:22,600 --> 00:54:26,280
Speaker 2: we were given as children. My heart aches for them

925
00:54:26,560 --> 00:54:29,640
Speaker 2: and for her, the marian who begged to be changed

926
00:54:29,680 --> 00:54:33,400
Speaker 2: at nine and nineteen, who ran into classroom closets and

927
00:54:33,440 --> 00:54:38,239
Speaker 2: office bathrooms. Some day I would tell her, you will

928
00:54:38,239 --> 00:54:40,640
Speaker 2: have a name for what you are, and you will

929
00:54:40,680 --> 00:54:42,400
Speaker 2: never again have to keep it hidden.

930
00:54:49,239 --> 00:54:53,279
Speaker 1: Family secrets is a production of iHeartRadio. Molly's Accur is

931
00:54:53,280 --> 00:54:56,480
Speaker 1: the story editor and Dylan Fagin is the executive producer.

932
00:54:57,719 --> 00:54:59,760
Speaker 1: If you have a family secret you'd like to share,

933
00:55:00,120 --> 00:55:02,560
Speaker 1: please leave us a voicemail and your story could appear

934
00:55:02,560 --> 00:55:06,000
Speaker 1: on an upcoming episode. Our number is one eight eight

935
00:55:06,000 --> 00:55:10,200
Speaker 1: eight Secret zero. That's the number zero. You can also

936
00:55:10,320 --> 00:55:15,120
Speaker 1: find me on Instagram at Danny Ryder. And if you'd

937
00:55:15,120 --> 00:55:17,600
Speaker 1: like to know more about the story that inspired this podcast,

938
00:55:18,000 --> 00:55:38,040
Speaker 1: check out my memoir Inheritance. For more podcasts from iHeartRadio,

939
00:55:38,160 --> 00:55:41,680
Speaker 1: visit the iHeartRadio app, Apple Podcasts, or wherever you listen

940
00:55:41,680 --> 00:55:42,680
Speaker 1: to your favorite shows.