WEBVTT - The Rage Didn’t End Until the Mystery Did

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<v Speaker 1>Family Secrets is a production of iHeartRadio.

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<v Speaker 2>I see that girl with her cow licks and her

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<v Speaker 2>sleepy eyes, trying so hard to be the peppy, energetic,

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<v Speaker 2>playful kid everyone wanted her to be, and I imagine

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<v Speaker 2>taking her in my arms like some romance hero and saying,

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<v Speaker 2>you are not broken. There is a better, more beautiful

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<v Speaker 2>word for what you are.

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<v Speaker 1>That's Marianne Chambari, Portland, Oregon based essayist and author of

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<v Speaker 1>the recent memoir A Little Less Broken. Marianne's is a

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<v Speaker 1>story of a very particular kind of secret, the kind

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<v Speaker 1>so hidden that it seems possible that it doesn't exist

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<v Speaker 1>at all, and yet shapes the course of an entire life,

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

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<v Speaker 1>is Family Secrets. The secrets that are kept from us,

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<v Speaker 1>the secrets we keep from others, and the secrets we

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<v Speaker 1>keep from ourselves. Tell me about the landscape of your

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<v Speaker 1>childhood in Old Greenwich, Connecticut.

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<v Speaker 2>I think when I look back, it honestly feels almost

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<v Speaker 2>like I'm watching the movie of my childhood. We had

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<v Speaker 2>this house that butted up against the woods, and I

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<v Speaker 2>spent a lot of my childhood running through those woods.

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<v Speaker 2>Make little soup out of wild onions. And it wasn't

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<v Speaker 2>really until I was an adult that I looked back

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<v Speaker 2>at a lot of those kind of idyllic memories and

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<v Speaker 2>saw them for what they were, which for the most

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<v Speaker 2>part was me trying to hide from people and me

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<v Speaker 2>feeling like I was not like everybody else. I did

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<v Speaker 2>not want to be around my family, as loving and

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<v Speaker 2>wonderful as they are. I am the only girl, and

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<v Speaker 2>I have three younger brothers, and there's my parents.

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<v Speaker 1>So it was a.

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<v Speaker 2>Big, very bustling house right near downtown Old Greenwage, and

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<v Speaker 2>I describe it as the Weasley House from Harry Potter.

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<v Speaker 2>It was like tilting to one side as my parents

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<v Speaker 2>built up. Our house was a shack compared to the

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<v Speaker 2>rest of the houses in Greenwich. I was very serious

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<v Speaker 2>compared to my siblings who were always yelling and having

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<v Speaker 2>nerf fights and playing video games, and I was quiet

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<v Speaker 2>and reading all the time and wanting to escape into

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<v Speaker 2>the woods. And so most of my childhood actually feels

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<v Speaker 2>like there's two sides of it. There's the movie that

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<v Speaker 2>I'm watching, the very pleasant ville idyllic suburban American childhood,

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<v Speaker 2>and then there was the interior of what was happening

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<v Speaker 2>within me, which was that I hated myself most of

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<v Speaker 2>the time and I felt separate from the rest of

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<v Speaker 2>my family. My dad was a journalist. We moved to

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<v Speaker 2>Connecticut when I was five or six. He got a

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<v Speaker 2>job at the New York Times, so it was his

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<v Speaker 2>absolute dream job. I think he was the editor of

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<v Speaker 2>the Connecticut section for a while before it no longer existed.

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<v Speaker 2>He wrote a column called family Man, where he wrote

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<v Speaker 2>about being a dad and about me and my siblings.

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<v Speaker 2>And I found a note. So my dad is a

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<v Speaker 2>bit of a paper hoarder. And they recently sold the

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<v Speaker 2>house in Connecticut to move out to Oregon, and my

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<v Speaker 2>dad gave me boxes of old papers that he's kept

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<v Speaker 2>over the years, and I was going through them literally

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<v Speaker 2>just two days ago, and I found this little scrap

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<v Speaker 2>of paper where he had been transcribing the conversations that

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<v Speaker 2>I was having with my friends at my third grade

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<v Speaker 2>birthday party. And he saved that transcription, so it says

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<v Speaker 2>I have a crush on Cory. Don't tell anyone. I

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<v Speaker 2>would be so embarrassed if anyone knew. And I very

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<v Speaker 2>vividly remember a week after that birthday, his family man

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<v Speaker 2>column was about my third grade slumber party and all

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<v Speaker 2>the boys we had a crush on, And all my

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<v Speaker 2>friends came to school the next day and were livid

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<v Speaker 2>with me and livid at my dad because their parents

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

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<v Speaker 2>such and such a newspaper about all the crushes you have.

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<v Speaker 2>And I already did not have very many friends. But

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<v Speaker 2>that was really that killed any chance I had of

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<v Speaker 2>having any sort of like real intimate relationships with girls

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<v Speaker 2>in elementary school especially. So yes, my dad was a

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<v Speaker 2>journalist but it came with some very serious downsides for

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<v Speaker 2>a while.

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<v Speaker 1>So he named names.

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

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<v Speaker 2>he wasn't he was not thinking. So old greenwage is.

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<v Speaker 2>I describe it as the love child between Norman Rockwell

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<v Speaker 2>and a boat shoe. All of my friends had sail boats,

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<v Speaker 2>and they belonged to a beach club. But it's the

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<v Speaker 2>type of wealthy that you wouldn't necessarily know it by

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<v Speaker 2>looking at someone. And everyone always wore the same clothes,

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<v Speaker 2>right they're wearing their Nantucket reds. When I was in

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<v Speaker 2>middle school, I think everyone started wearing ug boots and

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

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<v Speaker 2>by its very nature was very exclusive. You were on

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<v Speaker 2>the outside if you didn't have the right clothing or

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<v Speaker 2>live in the right house. Even from an extremely young age,

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<v Speaker 2>it would be very obvious who was one of us

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<v Speaker 2>and who wasn't, and I obviously was not. My parents

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<v Speaker 2>did not care about ugs. We shopped at DSW and

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<v Speaker 2>my mom is very thrifty and very environmentally conscious before

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<v Speaker 2>it was cool, and so she was always hand washing

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<v Speaker 2>our ziploc bags and hanging them to dry around the house.

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<v Speaker 2>There was always food that had gone off in the fridge,

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<v Speaker 2>for sure. So I was already different in my family

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<v Speaker 2>simply by the nature of my gender, right, I was

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<v Speaker 2>the girl, and then I had these younger boys. I

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<v Speaker 2>was different because my parents were journalists and not hedge

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<v Speaker 2>fund manaitures, and so in Greenwich, if you're not in finance,

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

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<v Speaker 2>like very comfortably middle class, but like it felt that

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<v Speaker 2>way growing up. I already had two strikes against me.

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<v Speaker 2>So on top of that, my mom is also Puerto Rican,

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<v Speaker 2>so then there's this racial element as well. I loved

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<v Speaker 2>talking about Puerto Rico. Growing up, I learned Spanish and

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<v Speaker 2>English at the same time. I would wear my abuillos guayabra,

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<v Speaker 2>which is this like very typical kind of Puerto Rican

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<v Speaker 2>and Cuban white button down shirt, and I would wear

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<v Speaker 2>it to school. I would bring mpanadas to school, So

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<v Speaker 2>then there's the kind of racial difference. And then on

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<v Speaker 2>top of all of that, I was quote unquote weird.

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<v Speaker 2>I talk a lot. I have no filter, and so

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<v Speaker 2>I would often just say the thing that I was

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<v Speaker 2>feeling in any given moment. There was this kid. He

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<v Speaker 2>was very rich, and everyone called him rich bitch behind

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<v Speaker 2>his back. That was his nickname, which is so silly

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<v Speaker 2>because it's Greenwich, Connecticut and everybody was rich, but he

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<v Speaker 2>was richer than all the other rich kids, and I

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<v Speaker 2>did not realize that I couldn't just call him rich

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<v Speaker 2>bitch to his face, and so I did, which is

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<v Speaker 2>when the vice principal took me to her office and

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<v Speaker 2>said that I was the worst kid in fourth grade.

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<v Speaker 2>And it's so bonkers to me now because I did

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<v Speaker 2>not feel bad. I got good grades, I was smart,

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<v Speaker 2>I showed up on time. I was not the one

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<v Speaker 2>inventing the nickname rich Bitch. I was not the one

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<v Speaker 2>throwing kickballs at people's heads at recess. I was not

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<v Speaker 2>one of the bitchy popular girls who was constantly mean

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<v Speaker 2>behind other kids' backs. I wasn't passing shitty notes. But

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<v Speaker 2>because I didn't have a filter and I couldn't pretend

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<v Speaker 2>to be someone I wasn't in the way that a

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<v Speaker 2>lot of the kids could, it was immediately obvious to

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<v Speaker 2>people that I was different, and different was bad. I

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<v Speaker 2>didn't remember this until recently, but I didn't have a

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<v Speaker 2>lot of control over my body in the same way

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<v Speaker 2>that other kids did. So a very easy example is

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<v Speaker 2>said I was terrible at sports, right, not a huge deal.

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<v Speaker 2>Lots of people are terrible at sports. I would be

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<v Speaker 2>the one in the far far outfield picking dantellions or whatever.

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<v Speaker 2>But I also had constant pea accidents all the way

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<v Speaker 2>until I was in middle school. Actually, I remember in

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<v Speaker 2>first or second grade meeting my next door neighbors for

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<v Speaker 2>the first time, and they were so funny. Oh my god,

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<v Speaker 2>I was obsessed with them right away, and they were

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<v Speaker 2>talking and joking to me, and I was just laughing

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<v Speaker 2>so hard and completely not conscious of the fact that

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<v Speaker 2>I needed to pee, and I just completely wet myself

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<v Speaker 2>in front of these like very cool, funny kids. I

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<v Speaker 2>was probably in second grade, so let's say I was

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<v Speaker 2>eight years old, but that would continue, right. It happened

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<v Speaker 2>in class. It happened probably in third or fourth grade

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<v Speaker 2>at a friend's house. Same thing. It felt like my

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<v Speaker 2>body and my brain were constantly divided, and I wasn't

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<v Speaker 2>often aware of what was happening to my body until

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<v Speaker 2>it was too late, And most of the time it

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<v Speaker 2>involved peeing on the floor of my friend's houses up

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<v Speaker 2>until I was thirteen. So the most recent memory I

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<v Speaker 2>was thirteen or fourteen. I was trick or treating, you know,

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<v Speaker 2>it's that year when everyone tells you you're too old

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<v Speaker 2>to trick or treat, but you go anyway. And we

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<v Speaker 2>were like knocking on someone's door, and as soon as

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<v Speaker 2>she opened, it occurred to me, Oh my god, I

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<v Speaker 2>have to pee so bad, And I was like, can

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<v Speaker 2>I use your bathroom? And I sprinted past her into

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<v Speaker 2>her bathroom, peed all over her bathroom floor, and then

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<v Speaker 2>just left it there. God, it's so embarrassing in eindsight,

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

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<v Speaker 2>Until the past couple of years. Really well, that.

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<v Speaker 1>Makes so much sense because it seems to me correct

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

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<v Speaker 1>disc connect between interior and exterior, between body and brain,

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<v Speaker 1>between brain and environment that like the way that you

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<v Speaker 1>describe it, and this profound sort of excess of stimulation.

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<v Speaker 1>I mean, one of the things that struck me that

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<v Speaker 1>you wrote about is there's some really wonderful sprinkling through

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<v Speaker 1>of theory In your book and The Invisible World's theory

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<v Speaker 1>of autism, the researchers Kamela and Henry Markram suggest that

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<v Speaker 1>autism isn't just a differently wired brain, but a brain

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<v Speaker 1>with more wiring in other words, supercharged. And so it

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<v Speaker 1>feels like with that supercharged brain, I can imagine that

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<v Speaker 1>it would disconnect from just the oh I need to

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<v Speaker 1>pee in advance.

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<v Speaker 2>I had really never thought about it that way. That

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<v Speaker 2>is an extremely articulate explanation of what I think is happening. Yeah,

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<v Speaker 2>I think I think that's exactly it. The example I

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<v Speaker 2>always use is just when I'm working from home, right,

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<v Speaker 2>I'm in my office, I'm trying to write and a

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<v Speaker 2>car slashes by outside and my next door neighbor is

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<v Speaker 2>hammering at his roof again for the millionth time, and

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<v Speaker 2>there's a dog barking across the street, and my husband's

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<v Speaker 2>chair is squeaking upstairs, and my cat is trying to

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<v Speaker 2>get into the office, and all of those things are

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<v Speaker 2>competing for an equal amount of attention, and it's very

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<v Speaker 2>hard to just focus on one of those things, and

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

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<v Speaker 2>for example, my hands and feet will get really numb

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<v Speaker 2>because I haven't moved them, or I'll have to go

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

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<v Speaker 2>And so I can imagine on Halloween when you're thirteen,

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<v Speaker 2>you're laughing with your friends and you're full of candy

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

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<v Speaker 2>The having to pee is just it's being drowned out

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<v Speaker 2>by the fifty other things that are competing for your attention.

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<v Speaker 2>In today's world, this cluster of behaviors would likely be

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<v Speaker 2>recognized earlier, a diagnosis made along with accommodations. Perhaps now

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<v Speaker 2>a young Marian could grow up truly knowing herself, accepting herself.

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<v Speaker 2>But this is not remotely what happened for Marian. All

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<v Speaker 2>the unknowns were manifesting in her body, her environment, all

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<v Speaker 2>of which were deeply misunderstood by those around her. And

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<v Speaker 2>she misunderstood herself too, of course she did. She had

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<v Speaker 2>no map. It's terrible for people to misunderstand you. It's

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<v Speaker 2>terrible to be told that you're the worst kid in

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<v Speaker 2>fourth grade when you really just thought you were just

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<v Speaker 2>repeating what everyone else was doing. You don't see how

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

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<v Speaker 2>I just felt like I was insane constantly for decades.

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<v Speaker 2>I did not know that the constant pe accidents, the

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<v Speaker 2>blunt honesty, the knee to retreat to small, dark, quiet places,

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<v Speaker 2>the stimming, that these things were part of a collection

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<v Speaker 2>of conditions that's called autism. And so the stimming is

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<v Speaker 2>a great example. So for a really long time, I

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<v Speaker 2>thought that I had ticks or later turets. That was

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<v Speaker 2>one of my many diagnoses in my twenties was that

0:13:20.960 --> 0:13:24.960
<v Speaker 2>I had tourets because I was very often twitching my face.

0:13:25.720 --> 0:13:29.000
<v Speaker 2>I would blink really hard and then flare my nostrils,

0:13:29.520 --> 0:13:31.600
<v Speaker 2>and I remember the first time someone called me out

0:13:31.640 --> 0:13:33.439
<v Speaker 2>on it was a guy that I had a crush

0:13:33.480 --> 0:13:36.080
<v Speaker 2>on in sixth grade, and he said, why do you

0:13:36.120 --> 0:13:38.080
<v Speaker 2>move your face all weird like that? You look like

0:13:38.120 --> 0:13:42.319
<v Speaker 2>a rabbit. And so there was this very visible indicator

0:13:42.440 --> 0:13:45.040
<v Speaker 2>from very early on that I was different, that there's

0:13:45.040 --> 0:13:48.959
<v Speaker 2>something wrong with me. And again I just internalized that.

0:13:49.320 --> 0:13:51.760
<v Speaker 2>Over the years, I just internalized all the ways that

0:13:51.800 --> 0:13:54.520
<v Speaker 2>I was different, and because I didn't know I was autistic,

0:13:54.640 --> 0:13:56.440
<v Speaker 2>I just thought there was something wrong with me. I

0:13:56.559 --> 0:14:02.880
<v Speaker 2>was broken. I'm weird, I'm twitchy, I'm gross, I'm moody,

0:14:02.960 --> 0:14:06.240
<v Speaker 2>like name fun adjective. And I had hurled that at

0:14:06.240 --> 0:14:07.479
<v Speaker 2>myself constantly.

0:14:09.520 --> 0:14:13.280
<v Speaker 1>Marianne writes, at thirteen, all I knew was what I

0:14:13.280 --> 0:14:16.160
<v Speaker 1>had been told. And there are only so many times

0:14:16.200 --> 0:14:18.960
<v Speaker 1>you can tell a girl she's broken before she starts

0:14:18.960 --> 0:14:22.720
<v Speaker 1>to believe it. This has such a universal ring of truth,

0:14:23.040 --> 0:14:27.960
<v Speaker 1>doesn't it, Because as children, as teenagers, we tend to

0:14:28.040 --> 0:14:32.720
<v Speaker 1>define ourselves by who we're told we are. Marianne's been

0:14:32.720 --> 0:14:35.920
<v Speaker 1>told she's weird and bad, that she's just too much,

0:14:36.760 --> 0:14:39.560
<v Speaker 1>and now she's a teenager, and some of this starts

0:14:39.560 --> 0:14:45.520
<v Speaker 1>manifesting itself as anger. It's a perfect storm. She smashes things,

0:14:45.600 --> 0:14:50.320
<v Speaker 1>breaks things, and also is being broken diagnoses all of

0:14:50.360 --> 0:14:54.320
<v Speaker 1>them wrong are hurled at her too, anger, management problems,

0:14:54.880 --> 0:15:00.640
<v Speaker 1>emotional dysregulation. For now, her bones know, she doesn't have

0:15:00.680 --> 0:15:01.480
<v Speaker 1>the language.

0:15:02.560 --> 0:15:05.600
<v Speaker 2>It's like growing up thinking that you're one race and

0:15:05.640 --> 0:15:08.640
<v Speaker 2>then you're not, or thinking that your parents are your

0:15:08.640 --> 0:15:11.240
<v Speaker 2>biological parents, and then you find out you're adopted. It's

0:15:11.280 --> 0:15:14.280
<v Speaker 2>like this core piece of information, even if no one

0:15:14.400 --> 0:15:18.040
<v Speaker 2>was quote unquote keeping it from you, it's still there,

0:15:18.160 --> 0:15:21.680
<v Speaker 2>you still know it. I think a lot about Sylvia Plath. Actually,

0:15:22.040 --> 0:15:25.640
<v Speaker 2>a writing teacher of mine was explaining that many people

0:15:25.680 --> 0:15:29.920
<v Speaker 2>in Sylvia's family had killed themselves, but nobody told her,

0:15:30.440 --> 0:15:34.000
<v Speaker 2>and so she's feeling the feelings, the depression and the

0:15:34.000 --> 0:15:37.920
<v Speaker 2>suicidal ideation, all of that, but not knowing why. And

0:15:38.120 --> 0:15:41.440
<v Speaker 2>obviously this was ages ago, and I cannot diagnose anyone

0:15:41.440 --> 0:15:45.720
<v Speaker 2>through history. But I just feel like hidden knowledge exists

0:15:45.760 --> 0:15:49.280
<v Speaker 2>in our bodies, and if we're given access to it,

0:15:49.360 --> 0:15:51.800
<v Speaker 2>if we know why we are the way we are, like,

0:15:52.200 --> 0:15:55.320
<v Speaker 2>could it save us? Could it have saved Sylvia to

0:15:55.360 --> 0:15:58.040
<v Speaker 2>know that it wasn't just her, that this ran in

0:15:58.080 --> 0:16:00.760
<v Speaker 2>her family, that this thing that she's feeling is genetic.

0:16:01.040 --> 0:16:04.040
<v Speaker 2>It has nothing to do with her or something that

0:16:04.080 --> 0:16:07.120
<v Speaker 2>she's quote unquote doing or not doing wrong. And I

0:16:07.160 --> 0:16:09.120
<v Speaker 2>think more information is only a good thing.

0:16:12.680 --> 0:16:28.080
<v Speaker 1>We'll be back in a moment with more family secrets.

0:16:29.640 --> 0:16:33.320
<v Speaker 1>Marian goes to college in North Carolina at Davidson and

0:16:33.400 --> 0:16:36.120
<v Speaker 1>it's the first extended time she's been away from her family.

0:16:36.920 --> 0:16:40.480
<v Speaker 1>She travels to the UK for a semester abroad, which,

0:16:40.680 --> 0:16:42.680
<v Speaker 1>when she falls in love with a man named Lewis,

0:16:43.160 --> 0:16:46.760
<v Speaker 1>turns into a much longer period of time overseas once

0:16:46.800 --> 0:16:49.760
<v Speaker 1>she graduates and moves in with him, first to London,

0:16:50.040 --> 0:16:52.320
<v Speaker 1>then to New Zealand, where his family lives.

0:16:53.880 --> 0:16:57.600
<v Speaker 2>So, yeah, I moved in. I'm twenty five years old.

0:16:57.720 --> 0:17:01.480
<v Speaker 2>I have moved across the world with my boyfriend. We

0:17:01.600 --> 0:17:05.880
<v Speaker 2>had this beautiful romantic love story in London, straight out

0:17:05.920 --> 0:17:08.359
<v Speaker 2>of some rom com with Hugh Grant. He even looked

0:17:08.359 --> 0:17:11.399
<v Speaker 2>a little bit like Hugh Grant. And everything was great

0:17:11.480 --> 0:17:13.399
<v Speaker 2>when we're living in London and we're both in this

0:17:13.480 --> 0:17:16.720
<v Speaker 2>city that we love and living in separate apartments. But

0:17:16.800 --> 0:17:20.399
<v Speaker 2>once we were in New Zealand, I'm confronted with so

0:17:20.560 --> 0:17:23.720
<v Speaker 2>many differences. I don't have a job, I'm living with

0:17:23.800 --> 0:17:27.440
<v Speaker 2>his parents, who are the loveliest human beings, but are

0:17:27.480 --> 0:17:30.960
<v Speaker 2>still someone else's parents and you're in their home. I'm

0:17:30.960 --> 0:17:34.600
<v Speaker 2>in a country that I'm completely unfamiliar with, and the

0:17:34.640 --> 0:17:38.920
<v Speaker 2>houses infested with cockroaches, which are my biggest, absolute, biggest fear.

0:17:39.920 --> 0:17:44.080
<v Speaker 2>I became a completely different person from the woman that

0:17:44.119 --> 0:17:47.560
<v Speaker 2>he met in London. I went from fun, loving and

0:17:47.640 --> 0:17:53.560
<v Speaker 2>adventurous and this performance of a sexy American to suddenly

0:17:53.600 --> 0:17:57.560
<v Speaker 2>being afraid all the time. Constantly, I was afraid of

0:17:57.560 --> 0:17:59.560
<v Speaker 2>his parents. I would hide in his room so that

0:17:59.600 --> 0:18:02.480
<v Speaker 2>I wouldn't have to talk to them. I would stay hungry

0:18:02.920 --> 0:18:05.199
<v Speaker 2>and pretend that I didn't want dinner because I just

0:18:05.800 --> 0:18:09.840
<v Speaker 2>couldn't keep up that performance of the fun American girlfriend.

0:18:10.560 --> 0:18:13.919
<v Speaker 2>And the cockroach is the constant. If you've ever had

0:18:13.920 --> 0:18:17.120
<v Speaker 2>a phobia, it's so silly saying it out loud, because

0:18:17.160 --> 0:18:21.240
<v Speaker 2>it's just a bug. But I cannot express the sense

0:18:21.280 --> 0:18:23.920
<v Speaker 2>of fear that I lived in every second of every

0:18:24.000 --> 0:18:27.280
<v Speaker 2>day in that house, like I could not move, I

0:18:27.320 --> 0:18:29.920
<v Speaker 2>couldn't get out of bed or go to the bathroom

0:18:30.000 --> 0:18:35.200
<v Speaker 2>without scouring every single corner and every wall for a cockroach.

0:18:36.000 --> 0:18:38.199
<v Speaker 2>And a lot of the time because there were a

0:18:38.240 --> 0:18:41.800
<v Speaker 2>lot of cockroaches, there would be one, and it felt

0:18:41.800 --> 0:18:46.480
<v Speaker 2>like being electrocuted, and so that took everything out of me.

0:18:47.200 --> 0:18:49.480
<v Speaker 2>And it wasn't until years later that I discovered this

0:18:49.560 --> 0:18:52.840
<v Speaker 2>idea of spoon theory, which was created by a woman

0:18:52.880 --> 0:18:55.960
<v Speaker 2>with lupus I believe, who was explaining to her friend.

0:18:56.359 --> 0:18:59.960
<v Speaker 2>They're having dinner and the friend is trying to understand

0:19:00.080 --> 0:19:03.600
<v Speaker 2>what it's like to live with lupus, and so Christine

0:19:03.680 --> 0:19:05.680
<v Speaker 2>I think is her name, hands a bunch of spoons

0:19:05.680 --> 0:19:08.600
<v Speaker 2>to her friend and says, Okay, these are your spoons

0:19:08.600 --> 0:19:12.399
<v Speaker 2>for the day. Everything you do takes a spoon. You

0:19:12.440 --> 0:19:14.120
<v Speaker 2>want to get up and wash your hair and put

0:19:14.160 --> 0:19:16.280
<v Speaker 2>on makeup and get dressed, that's going to be a spoon.

0:19:16.840 --> 0:19:19.800
<v Speaker 2>You need to commute to work, Oh, but that would

0:19:19.840 --> 0:19:21.960
<v Speaker 2>usually be a spoon, But there's an accident and there's

0:19:22.000 --> 0:19:23.440
<v Speaker 2>a lot of traffic and it takes an hour and

0:19:23.480 --> 0:19:25.600
<v Speaker 2>a half. That's actually going to cost you three spoons.

0:19:25.960 --> 0:19:27.520
<v Speaker 2>By the time you get to work, you're halfway through

0:19:27.560 --> 0:19:30.200
<v Speaker 2>your spoons already. And by the end of the day,

0:19:30.720 --> 0:19:34.240
<v Speaker 2>if you're out of spoons, you cannot feed yourself, you

0:19:34.280 --> 0:19:37.040
<v Speaker 2>can't go to the gym, you can't go out with friends,

0:19:37.200 --> 0:19:39.879
<v Speaker 2>you collapse into bed without brushing your teeth. That's how

0:19:39.920 --> 0:19:42.280
<v Speaker 2>I lived, that's how I continue to live. And so

0:19:42.960 --> 0:19:45.480
<v Speaker 2>living in New Zealand with parents who were not my own,

0:19:45.680 --> 0:19:47.800
<v Speaker 2>who wanted to talk to me all the time, and

0:19:47.840 --> 0:19:50.720
<v Speaker 2>I had to perform and be a good house guest,

0:19:51.080 --> 0:19:54.560
<v Speaker 2>essentially in my own home for six months, followed by

0:19:54.600 --> 0:19:58.240
<v Speaker 2>living with a phobia, it meant that I was completely incapacitated.

0:19:58.680 --> 0:20:02.560
<v Speaker 2>I didn't work, I barely got out of bed, and

0:20:02.600 --> 0:20:05.560
<v Speaker 2>me and the boyfriend lasted six months after I moved

0:20:05.600 --> 0:20:07.399
<v Speaker 2>to New Zealand because I am with a person now

0:20:07.440 --> 0:20:09.159
<v Speaker 2>who deals with that all the time. But you know,

0:20:09.240 --> 0:20:11.080
<v Speaker 2>at twenty five, when you're just learning how to be

0:20:11.080 --> 0:20:13.480
<v Speaker 2>into relationships, that was not something that he was capable

0:20:13.520 --> 0:20:16.600
<v Speaker 2>of handling. And because I didn't understand it, I didn't

0:20:16.680 --> 0:20:19.720
<v Speaker 2>understand that my spoons were being blown by lunchtime, there

0:20:19.800 --> 0:20:21.399
<v Speaker 2>was no way to fix it. And this is what

0:20:21.440 --> 0:20:24.320
<v Speaker 2>I'm talking about, how knowledge of yourself is so much power.

0:20:24.840 --> 0:20:27.400
<v Speaker 2>Is I live a very different style of life now

0:20:27.480 --> 0:20:30.080
<v Speaker 2>that allows me to have enough spoons for the whole day.

0:20:31.920 --> 0:20:34.440
<v Speaker 1>Marion stays in New Zealand for a couple more years.

0:20:35.000 --> 0:20:37.320
<v Speaker 1>She and Lewis are broken up, so she moves into

0:20:37.320 --> 0:20:41.439
<v Speaker 1>her own place, not a cockroach in sight. She lasts

0:20:41.520 --> 0:20:44.480
<v Speaker 1>as long as she can there, grateful for the grand adventure,

0:20:45.040 --> 0:20:48.520
<v Speaker 1>but eventually must move back to the States. She goes

0:20:48.560 --> 0:20:50.919
<v Speaker 1>to San Francisco, where she's gotten a job at a

0:20:50.960 --> 0:20:55.399
<v Speaker 1>travel tech startup. On paper, it's a fantastic place to land,

0:20:55.960 --> 0:20:58.199
<v Speaker 1>a great opportunity. That's not lost on Marian.

0:21:00.480 --> 0:21:03.920
<v Speaker 2>Tech is a hard place if you have sensory issues.

0:21:04.480 --> 0:21:07.720
<v Speaker 2>So the first office that I worked at was like

0:21:07.840 --> 0:21:12.920
<v Speaker 2>a preschool jungle gym. It was a huge warehouse, completely

0:21:13.040 --> 0:21:17.320
<v Speaker 2>open concept. There was an adult swing set hanging from

0:21:17.320 --> 0:21:20.560
<v Speaker 2>the rafters and one of those like parachutes that they

0:21:20.680 --> 0:21:23.760
<v Speaker 2>use in preschools, like pinned to the ceiling. There were

0:21:23.880 --> 0:21:27.919
<v Speaker 2>quote unquote family dinners for breakfast, lunch, and dinner. They

0:21:27.920 --> 0:21:31.840
<v Speaker 2>wanted to keep you in the office. And it's so loud,

0:21:32.240 --> 0:21:35.199
<v Speaker 2>and everyone was just on a lot of drugs. They

0:21:35.240 --> 0:21:38.800
<v Speaker 2>were constantly partying. It was like a frat house, but

0:21:39.000 --> 0:21:41.480
<v Speaker 2>a job that you got paid for and lots of

0:21:41.520 --> 0:21:43.399
<v Speaker 2>people love that. There is a whole culture of that

0:21:43.440 --> 0:21:47.440
<v Speaker 2>in San Francisco. But as someone with extreme social anxiety,

0:21:48.080 --> 0:21:51.000
<v Speaker 2>I can be hard to be around and so I'm

0:21:51.040 --> 0:21:54.560
<v Speaker 2>watching all my coworkers have fun together while I scowl

0:21:54.720 --> 0:21:58.439
<v Speaker 2>at my desk, and it's very loud, So how do

0:21:58.520 --> 0:22:03.560
<v Speaker 2>you concentrate? And speaking of spoons, they were just exhausted

0:22:03.760 --> 0:22:06.080
<v Speaker 2>after an hour of being in the office. I used

0:22:06.080 --> 0:22:08.639
<v Speaker 2>to come home after that job every day and just

0:22:08.840 --> 0:22:11.720
<v Speaker 2>sob for hours, and I just didn't understand how people

0:22:11.760 --> 0:22:16.400
<v Speaker 2>had careers, really, And so after that job, I got

0:22:16.440 --> 0:22:18.879
<v Speaker 2>another tech job and then another tech job, and they

0:22:18.920 --> 0:22:23.000
<v Speaker 2>were all exactly the same. The offices were all open

0:22:23.040 --> 0:22:27.040
<v Speaker 2>concept and loud, and it was primarily focused on socializing.

0:22:27.240 --> 0:22:30.760
<v Speaker 2>And there was this expectation that in order to be

0:22:30.840 --> 0:22:33.680
<v Speaker 2>a good employee you had to be social and fun

0:22:33.880 --> 0:22:36.679
<v Speaker 2>and I am neither. I'm just not those things. I

0:22:36.720 --> 0:22:39.439
<v Speaker 2>am a hard worker and I'm smart, but social and

0:22:39.520 --> 0:22:42.520
<v Speaker 2>fun are not my best qualities. And so I would

0:22:42.560 --> 0:22:46.119
<v Speaker 2>often get feedback from my bosses that I needed to

0:22:46.160 --> 0:22:49.679
<v Speaker 2>smile more, that I needed to be more pleasant, that

0:22:49.760 --> 0:22:52.719
<v Speaker 2>I was too harsh. Every job I've ever had, I

0:22:52.760 --> 0:22:56.320
<v Speaker 2>have either quit very quickly because of the social demands

0:22:56.680 --> 0:23:00.520
<v Speaker 2>and the sensory input, or I've been fired because I'm

0:23:00.640 --> 0:23:03.760
<v Speaker 2>quote unquote unpleasant or too blunt. And when you.

0:23:03.720 --> 0:23:06.880
<v Speaker 1>Would be like, quote unquote unpleasant or too blunt. That's

0:23:06.920 --> 0:23:08.919
<v Speaker 1>how you were being perceived. But was that how you

0:23:08.960 --> 0:23:12.680
<v Speaker 1>perceived yourself or was there a disconnect between the way

0:23:12.680 --> 0:23:16.359
<v Speaker 1>that you felt you were being and the way that

0:23:16.400 --> 0:23:17.840
<v Speaker 1>other people saw you being.

0:23:18.400 --> 0:23:21.199
<v Speaker 2>That is such a good question. I really thought I

0:23:21.320 --> 0:23:24.600
<v Speaker 2>was being a good employee, that I was being smart.

0:23:24.960 --> 0:23:27.719
<v Speaker 2>I would give my all to these jobs, and I

0:23:27.800 --> 0:23:30.600
<v Speaker 2>cared about them. I absolutely drunk the kool aid at

0:23:30.640 --> 0:23:32.560
<v Speaker 2>every tech company that this is going to be the

0:23:32.600 --> 0:23:36.080
<v Speaker 2>next Facebook. Right, They all talked like such a big game.

0:23:36.480 --> 0:23:39.480
<v Speaker 2>But one example of this is I was working at

0:23:39.480 --> 0:23:42.800
<v Speaker 2>this travel startup and I had been invited by my

0:23:42.920 --> 0:23:47.120
<v Speaker 2>boss to go to the CEO's house, his fancy Soma

0:23:47.200 --> 0:23:51.480
<v Speaker 2>apartment in downtown San Francisco and have like a brainstorming day.

0:23:51.560 --> 0:23:54.200
<v Speaker 2>And it would be eight hours with the head of marketing,

0:23:54.200 --> 0:23:56.480
<v Speaker 2>the head of engineering, and the head of product and

0:23:56.520 --> 0:23:59.800
<v Speaker 2>the CEO and me. I was making barely any money.

0:23:59.800 --> 0:24:03.200
<v Speaker 2>I was a marketing assistant, and I felt, oh my god,

0:24:03.480 --> 0:24:06.320
<v Speaker 2>I finally made it. They see how valuable I am.

0:24:06.400 --> 0:24:10.119
<v Speaker 2>I'm so capable, this is the beginning of a great career.

0:24:10.200 --> 0:24:12.720
<v Speaker 2>And I was so happy to go and so I

0:24:12.800 --> 0:24:16.720
<v Speaker 2>really contributed. I don't know what their expectations of me were.

0:24:16.960 --> 0:24:20.199
<v Speaker 2>That's part of the problem is I assumed that I

0:24:20.280 --> 0:24:24.080
<v Speaker 2>was being invited as an equal, but maybe their assumption

0:24:24.200 --> 0:24:26.000
<v Speaker 2>was that I was coming to take notes. I really

0:24:26.040 --> 0:24:28.360
<v Speaker 2>don't know. And so I show up and I'm at

0:24:28.359 --> 0:24:31.360
<v Speaker 2>this guy's kitchen table and we're all brainstorming. And part

0:24:31.400 --> 0:24:34.479
<v Speaker 2>of my job was monitoring our community. I managed our

0:24:34.520 --> 0:24:37.919
<v Speaker 2>social media accounts that I'd go into deep into Reddit

0:24:37.960 --> 0:24:41.560
<v Speaker 2>and Facebook threads and collect information on how people felt

0:24:41.600 --> 0:24:45.320
<v Speaker 2>about our app, and I presented that information. Oh, everyone

0:24:45.640 --> 0:24:48.440
<v Speaker 2>hates the fact that there's not a calendar feature. Why

0:24:48.440 --> 0:24:51.199
<v Speaker 2>are we focusing all of our time and attention on

0:24:51.480 --> 0:24:54.240
<v Speaker 2>this random product that nobody wants when we should be

0:24:54.280 --> 0:24:57.639
<v Speaker 2>doing the calendar feature. And I think there's just something

0:24:57.640 --> 0:25:00.240
<v Speaker 2>about my tone that makes people feel like I'm talking

0:25:00.280 --> 0:25:04.280
<v Speaker 2>down to them or criticizing them. My tone of vois

0:25:04.320 --> 0:25:06.479
<v Speaker 2>during an interview is obviously very different from how it

0:25:06.520 --> 0:25:08.359
<v Speaker 2>is in a meeting. Some people are surprised when I

0:25:08.359 --> 0:25:10.879
<v Speaker 2>say that I'm unpleasant, but I think it's just my

0:25:11.040 --> 0:25:14.000
<v Speaker 2>tone comes across as rude or harsh, And part of

0:25:14.040 --> 0:25:16.000
<v Speaker 2>that might be because I'm a woman. Right, and that

0:25:16.160 --> 0:25:18.240
<v Speaker 2>was I think this was the same year that lean

0:25:18.280 --> 0:25:21.840
<v Speaker 2>In came out, and so I interpreted this year too

0:25:21.920 --> 0:25:25.560
<v Speaker 2>harsh as a sexism problem and not necessarily that I

0:25:25.600 --> 0:25:28.760
<v Speaker 2>was neurodivergent, if that makes sense. I think it's probably

0:25:28.760 --> 0:25:31.439
<v Speaker 2>a bit of both. But yeah, So I had this meeting,

0:25:31.800 --> 0:25:34.920
<v Speaker 2>I gave this feedback. I butted into the conversations. I'm

0:25:34.960 --> 0:25:37.840
<v Speaker 2>interrupting because I know best, right, I'm the one that's

0:25:37.840 --> 0:25:40.439
<v Speaker 2>been moderoring the community. I know the things. And the

0:25:40.480 --> 0:25:43.600
<v Speaker 2>next day I get an email from my boss, very short,

0:25:43.760 --> 0:25:47.320
<v Speaker 2>very kurt, saying you were incredibly inappropriate during the meeting yesterday.

0:25:47.359 --> 0:25:51.800
<v Speaker 2>You owe everyone in an apology, and I was completely shocked.

0:25:51.800 --> 0:25:54.920
<v Speaker 2>I'd thought I'd done an amazing job. It always came

0:25:54.920 --> 0:25:56.679
<v Speaker 2>as a shock to me when I was told that

0:25:56.720 --> 0:26:00.280
<v Speaker 2>I was being difficult.

0:26:01.119 --> 0:26:05.119
<v Speaker 1>In twenty thirteen, Marian meets a man named Eliot on

0:26:05.160 --> 0:26:08.679
<v Speaker 1>the dating site Okay Cupid. It is in fact his

0:26:08.840 --> 0:26:12.119
<v Speaker 1>first ever online date, and in a life that has

0:26:12.160 --> 0:26:14.879
<v Speaker 1>had its share of privilege but also a fair amount

0:26:14.880 --> 0:26:19.639
<v Speaker 1>of difficulty, this is an extraordinary blessing. Eliot is her

0:26:19.720 --> 0:26:23.560
<v Speaker 1>soulmate and just simply gets Marian right off the bat.

0:26:24.240 --> 0:26:27.320
<v Speaker 1>He doesn't have the language, and neither does she, but

0:26:27.400 --> 0:26:30.399
<v Speaker 1>somehow he knows what she needs and offers it to

0:26:30.480 --> 0:26:34.120
<v Speaker 1>her with a beautiful, simple generosity of spirit and love.

0:26:35.280 --> 0:26:38.600
<v Speaker 1>For example, one day, Elliot comes home to discover that

0:26:38.640 --> 0:26:42.000
<v Speaker 1>Marian has had a particularly hard time. He asks if

0:26:42.040 --> 0:26:45.760
<v Speaker 1>she's okay, and she says, no, I'm feeling a little

0:26:45.760 --> 0:26:49.880
<v Speaker 1>bit autistic. The word just pops out. She just says it,

0:26:50.000 --> 0:26:53.480
<v Speaker 1>almost as a joke. And then Elliot asks, do you

0:26:53.480 --> 0:26:57.280
<v Speaker 1>want me to lie on you? And she answers yes please.

0:26:58.160 --> 0:27:00.240
<v Speaker 1>His weight on her is like a prescription, and for

0:27:00.320 --> 0:27:04.439
<v Speaker 1>what her nervous system already knows, a classic example of

0:27:04.440 --> 0:27:07.679
<v Speaker 1>a secret she was keeping from herself, something her body

0:27:07.760 --> 0:27:10.520
<v Speaker 1>knew but her brain couldn't.

0:27:11.640 --> 0:27:15.480
<v Speaker 2>It was so crazy to me because that was ten

0:27:15.560 --> 0:27:19.040
<v Speaker 2>years ago. This was well before brook Lennon was selling

0:27:19.160 --> 0:27:22.040
<v Speaker 2>one hundred and fifty dollars weighted blankets. This was before

0:27:22.600 --> 0:27:25.960
<v Speaker 2>autism and women was like very much part of our conversation.

0:27:26.600 --> 0:27:29.040
<v Speaker 2>I didn't even know that much about autism. I don't

0:27:29.080 --> 0:27:32.600
<v Speaker 2>know why I said that, but it just came out

0:27:32.640 --> 0:27:35.440
<v Speaker 2>of me. I'd had some experience with autistic people. I

0:27:35.520 --> 0:27:37.320
<v Speaker 2>did a lot of babysitting when I was younger and

0:27:37.560 --> 0:27:40.200
<v Speaker 2>some of the kids were autistic. I'd watched rain Man

0:27:40.240 --> 0:27:43.520
<v Speaker 2>with everybody else, so like I understood pieces of it,

0:27:43.560 --> 0:27:46.840
<v Speaker 2>but I wasn't thinking about it in that way, and

0:27:46.880 --> 0:27:49.480
<v Speaker 2>it would be ten years before i'd get actually officially

0:27:49.520 --> 0:27:52.919
<v Speaker 2>diagnosed as autistic. But something in me knew that I

0:27:53.040 --> 0:27:55.880
<v Speaker 2>needed the pressure of his body. I think it's called

0:27:55.960 --> 0:28:00.720
<v Speaker 2>proprioceptive feedback. That lots of autistic people like to be squeezed.

0:28:00.800 --> 0:28:05.000
<v Speaker 2>Temple Granted invented a hug machine fifty years ago because

0:28:05.040 --> 0:28:10.080
<v Speaker 2>she wanted that squeezing pressure, and something in my body

0:28:10.160 --> 0:28:14.520
<v Speaker 2>knew that I needed it. But more importantly, I knew

0:28:14.520 --> 0:28:18.159
<v Speaker 2>that Elliott would give it to me without me feeling

0:28:18.200 --> 0:28:21.679
<v Speaker 2>like shit about myself. In New Zealand with Lewis, if

0:28:21.720 --> 0:28:25.080
<v Speaker 2>I saw a cockroach and started crying, fifty percent of

0:28:25.160 --> 0:28:28.000
<v Speaker 2>my feelings in that movement would be, Oh my god,

0:28:28.000 --> 0:28:30.639
<v Speaker 2>he's gonna leave me. I'm so pathetic. What is wrong

0:28:30.680 --> 0:28:33.800
<v Speaker 2>with me that I can't handle a bug? He hates me.

0:28:33.880 --> 0:28:37.520
<v Speaker 2>I'm making his life a living hell. Whereas I can

0:28:37.560 --> 0:28:40.960
<v Speaker 2>be with Elliot and have a meltdown and have my

0:28:41.040 --> 0:28:44.160
<v Speaker 2>nervous system just regulated. And all the therapy talk, and

0:28:44.200 --> 0:28:46.440
<v Speaker 2>I can say, can you please lay on me? And

0:28:47.200 --> 0:28:49.000
<v Speaker 2>no part of me is going to think that he

0:28:49.760 --> 0:28:51.920
<v Speaker 2>is going to leave or that he won't love me

0:28:52.120 --> 0:28:56.560
<v Speaker 2>because of it. He's always offered himself to me without

0:28:56.720 --> 0:28:59.920
<v Speaker 2>any sort of judgment or expectation, and it's my favorite

0:29:00.000 --> 0:29:05.840
<v Speaker 2>thing about him. We'll be right back.

0:29:28.720 --> 0:29:32.000
<v Speaker 1>Marian and Elliot have a baby, a daughter named June.

0:29:33.040 --> 0:29:36.960
<v Speaker 1>After June is born, Marian experiences a very brief honeymoon

0:29:37.000 --> 0:29:42.440
<v Speaker 1>period of early motherhood, a state of absolute ease and tranquility.

0:29:43.000 --> 0:29:48.080
<v Speaker 1>But brief is the keyword here. Soon it becomes extremely hard,

0:29:48.800 --> 0:29:52.680
<v Speaker 1>because having a baby and then a toddler is nothing

0:29:52.720 --> 0:29:56.880
<v Speaker 1>if not a prescription for overstimulation. Marian thought the tech

0:29:56.920 --> 0:30:01.760
<v Speaker 1>offices in Silicon Valley were overstimulating, but now now there's this.

0:30:03.520 --> 0:30:06.240
<v Speaker 1>Can you tell me about the baby shark incident?

0:30:07.200 --> 0:30:11.720
<v Speaker 2>Oh boy, baby shark is the work of the devil.

0:30:11.880 --> 0:30:14.600
<v Speaker 2>I'm convinced. It is a terrible thing that the world

0:30:14.640 --> 0:30:17.680
<v Speaker 2>has given to parents. And my daughter was obsessed with it.

0:30:17.760 --> 0:30:20.000
<v Speaker 2>So she is, I don't know one and a half

0:30:20.080 --> 0:30:23.320
<v Speaker 2>or two, and she was very colicky and she had

0:30:23.360 --> 0:30:25.800
<v Speaker 2>a lot of big feelings as two year olds do,

0:30:26.520 --> 0:30:28.640
<v Speaker 2>and she's telling me that she wants to listen to

0:30:28.680 --> 0:30:31.920
<v Speaker 2>Baby Shark. I'm exhausted. I'm at the end of my rope.

0:30:32.000 --> 0:30:33.840
<v Speaker 2>I do not want to listen to baby Shark. I

0:30:33.920 --> 0:30:36.840
<v Speaker 2>can't do it. But she's screaming and crying and screaming

0:30:36.880 --> 0:30:39.680
<v Speaker 2>and crying, and so that is already over stimulation. And

0:30:39.760 --> 0:30:42.480
<v Speaker 2>at this point I have to decide which is worse,

0:30:42.760 --> 0:30:45.400
<v Speaker 2>the screaming of a baby or baby shark. And I

0:30:45.480 --> 0:30:48.320
<v Speaker 2>decide that baby Shark is not as bad, so I

0:30:48.360 --> 0:30:50.120
<v Speaker 2>put on Baby Shark. But she doesn't want to listen

0:30:50.160 --> 0:30:52.400
<v Speaker 2>to Baby Shark. Baby Shark is the worst. She starts

0:30:52.400 --> 0:30:54.680
<v Speaker 2>screaming and crying and screaming and crying. We go back

0:30:54.720 --> 0:30:58.200
<v Speaker 2>and forth like this seventeen times, and by this point,

0:30:58.600 --> 0:31:02.560
<v Speaker 2>the stimulation of not only the noise but the very

0:31:03.440 --> 0:31:07.800
<v Speaker 2>normal I think maternal. Am I doing this wrong? Am

0:31:07.840 --> 0:31:09.920
<v Speaker 2>I fucking up my kid? Because I will or will

0:31:09.960 --> 0:31:13.000
<v Speaker 2>not be playing Baby Shark. She's got plumb in her hair,

0:31:13.160 --> 0:31:16.000
<v Speaker 2>she's a wreck. I'm dreading bathtime because she hates getting

0:31:16.000 --> 0:31:19.160
<v Speaker 2>her hair washed. So there's seventeen different thoughts whirling in

0:31:19.200 --> 0:31:23.600
<v Speaker 2>my head. And because I don't know that I'm autistic,

0:31:23.720 --> 0:31:26.920
<v Speaker 2>that I get over stimulated extremely easily, and that the

0:31:27.040 --> 0:31:29.040
<v Speaker 2>parent that I am now would go into the other

0:31:29.120 --> 0:31:33.720
<v Speaker 2>room or tap out or put on noise canceling earphones.

0:31:33.880 --> 0:31:38.040
<v Speaker 2>I did not know this then at thirty, and I

0:31:38.120 --> 0:31:42.360
<v Speaker 2>completely lose it. She screaming about baby Shark. I grab

0:31:42.480 --> 0:31:44.400
<v Speaker 2>the plate that she's eating the plum off of, and

0:31:44.440 --> 0:31:48.640
<v Speaker 2>I throw it against the wall and it breaks. And I'm,

0:31:48.680 --> 0:31:50.680
<v Speaker 2>of course horrified by what I've done, and I run

0:31:50.720 --> 0:31:52.880
<v Speaker 2>into the other room and I tell Elliot, I need

0:31:52.920 --> 0:31:56.240
<v Speaker 2>you to take over, and he does. But that kind

0:31:56.280 --> 0:32:02.680
<v Speaker 2>of incident of ramping up the overstimulation happened multiple times,

0:32:02.680 --> 0:32:04.960
<v Speaker 2>and I would end up throwing things, just like I

0:32:05.040 --> 0:32:07.200
<v Speaker 2>did when I was in high school. Right, I didn't

0:32:07.240 --> 0:32:09.760
<v Speaker 2>know what was going on. The rage didn't end until

0:32:09.760 --> 0:32:12.960
<v Speaker 2>the mystery did, and because I didn't know what was happening,

0:32:13.400 --> 0:32:17.080
<v Speaker 2>I would force myself to endure it. All Moms, deal

0:32:17.120 --> 0:32:19.360
<v Speaker 2>with this. What is wrong with you that you can't

0:32:19.360 --> 0:32:22.560
<v Speaker 2>handle listening to baby Shark that you get so worked

0:32:22.600 --> 0:32:24.120
<v Speaker 2>up because your baby is screaming.

0:32:26.600 --> 0:32:30.520
<v Speaker 1>During this time, Marian was seeing therapists. This was nothing new.

0:32:31.080 --> 0:32:34.360
<v Speaker 1>By her early thirties, she had been diagnosed or improperly

0:32:34.400 --> 0:32:40.560
<v Speaker 1>diagnosed with anxiety depression, high sensitivity, probably Charett's. She'd been

0:32:40.600 --> 0:32:44.440
<v Speaker 1>prescribed a bunch of SSRIs and none of this was working.

0:32:45.160 --> 0:32:46.160
<v Speaker 1>None of it made sense.

0:32:48.240 --> 0:32:51.040
<v Speaker 2>Every time I'd go to see a therapist or a psychiatrist,

0:32:51.560 --> 0:32:54.440
<v Speaker 2>or do a group coaching, or do a yoga teacher training,

0:32:54.520 --> 0:32:58.400
<v Speaker 2>or my gratitude journaling or whatever it was, none of

0:32:58.440 --> 0:33:01.240
<v Speaker 2>it felt like it answered question of why I was

0:33:01.680 --> 0:33:05.920
<v Speaker 2>the way that I was. And the pills did not help.

0:33:06.080 --> 0:33:08.320
<v Speaker 2>They dampened it a little bit, But I never felt

0:33:08.320 --> 0:33:11.960
<v Speaker 2>that same relief that people talk about when they take antidepressants.

0:33:12.160 --> 0:33:14.880
<v Speaker 2>I never felt, oh my god, this weight has been lifted.

0:33:15.280 --> 0:33:17.960
<v Speaker 2>It made me ten percent more capable. And I just

0:33:18.080 --> 0:33:20.720
<v Speaker 2>kept going round and round in circles with different doctors

0:33:20.760 --> 0:33:23.440
<v Speaker 2>trying to get some sort of answer, and they never

0:33:23.440 --> 0:33:25.960
<v Speaker 2>could give me one. And why do you.

0:33:25.920 --> 0:33:31.720
<v Speaker 1>Think that is? Because you were, in fact, and had

0:33:31.760 --> 0:33:36.480
<v Speaker 1>been for a very long time, presenting with a whole

0:33:36.600 --> 0:33:41.880
<v Speaker 1>series of behaviors and symptoms that would point to an

0:33:41.920 --> 0:33:47.960
<v Speaker 1>autism diagnosis, even though you were extremely high functioning. What

0:33:48.040 --> 0:33:48.840
<v Speaker 1>do you attribute that to?

0:33:50.520 --> 0:33:52.719
<v Speaker 2>I wish I had an answer to this, Danny, because

0:33:53.480 --> 0:33:56.160
<v Speaker 2>I feel like I'm going through it again now as

0:33:56.160 --> 0:34:00.680
<v Speaker 2>an adult with other shit, sleep apnea, insulin resist, whatever

0:34:00.760 --> 0:34:02.760
<v Speaker 2>the thing is. It feels like anytime I go to

0:34:02.800 --> 0:34:06.920
<v Speaker 2>a doctor, there is oh, this person thinks it's this thing,

0:34:06.960 --> 0:34:08.840
<v Speaker 2>and know, this doctor thinks it's this thing, and no,

0:34:08.960 --> 0:34:11.880
<v Speaker 2>you have to try this. It's just it's endless. So

0:34:12.000 --> 0:34:13.240
<v Speaker 2>I don't have a good answer.

0:34:13.520 --> 0:34:15.440
<v Speaker 1>Well, I guess it was a bit of a leading question.

0:34:15.960 --> 0:34:19.799
<v Speaker 1>How much of this is gender bias. There's a statistic

0:34:20.360 --> 0:34:25.240
<v Speaker 1>that eighty percent of autistic girls remain undiagnosed by age eighteen.

0:34:26.000 --> 0:34:29.319
<v Speaker 1>That would certainly not be true of autistic boys. And

0:34:29.360 --> 0:34:32.760
<v Speaker 1>then you have the hysteria piece of it. Women presenting

0:34:32.760 --> 0:34:36.080
<v Speaker 1>with these symptoms. In another century it would have been

0:34:36.080 --> 0:34:39.600
<v Speaker 1>called like neurasthenia. You know, it's just overly tensative.

0:34:40.560 --> 0:34:44.360
<v Speaker 2>Yeah, we don't love women just in general. But I

0:34:44.400 --> 0:34:47.359
<v Speaker 2>feel like, especially doctors don't love women. I know that's

0:34:47.400 --> 0:34:49.520
<v Speaker 2>a terrible thing to say, and I've luckily had some

0:34:49.640 --> 0:34:53.320
<v Speaker 2>lovely doctors, but I've also had some terrible doctors. And yeah,

0:34:53.440 --> 0:34:57.880
<v Speaker 2>eighty percent, eighty percent of women remain undiagnosed by the

0:34:57.920 --> 0:35:02.200
<v Speaker 2>time they're eighteen. Autistic women, which means the vast majority

0:35:02.200 --> 0:35:04.399
<v Speaker 2>of us are getting diagnosed the way that I did

0:35:04.600 --> 0:35:08.120
<v Speaker 2>in our thirties, forties, sixties. I get emails every day

0:35:08.160 --> 0:35:12.640
<v Speaker 2>from women of all decades, but all adults who didn't

0:35:12.640 --> 0:35:16.040
<v Speaker 2>find out they were autistic until much later. All of

0:35:16.080 --> 0:35:20.279
<v Speaker 2>our media representation about autism is focused on boys. Right.

0:35:20.360 --> 0:35:22.920
<v Speaker 2>It's only in the past couple of years that we've

0:35:22.960 --> 0:35:26.640
<v Speaker 2>started featuring autistic women and girls in movies and TV.

0:35:27.320 --> 0:35:29.160
<v Speaker 2>But for the most part, we thought it was a

0:35:29.160 --> 0:35:33.000
<v Speaker 2>boys disorder. It's completely bonkers to me. And it's not

0:35:33.040 --> 0:35:36.160
<v Speaker 2>just autism, right, It's not even just developmental disorders. Right.

0:35:36.560 --> 0:35:40.840
<v Speaker 2>Women are diagnosed later than men in over seven hundred

0:35:40.920 --> 0:35:45.000
<v Speaker 2>different conditions. Right. Our leading cause of death for women

0:35:45.239 --> 0:35:49.720
<v Speaker 2>is cardiovascular disease. And yet all of the quote unquote

0:35:49.719 --> 0:35:52.080
<v Speaker 2>symptoms of heart attacks that we see in the media

0:35:52.560 --> 0:35:56.600
<v Speaker 2>are the symptoms that men experience. A lot of pharmaceuticals

0:35:56.600 --> 0:36:00.280
<v Speaker 2>aren't even tested on women. Our lab rats are primarily made.

0:36:00.480 --> 0:36:03.600
<v Speaker 2>So it makes sense to me, given all of the

0:36:03.680 --> 0:36:08.439
<v Speaker 2>data about medicine and women, that you're going to tell

0:36:08.440 --> 0:36:10.759
<v Speaker 2>me that I'm anxious and you're not actually going to

0:36:10.800 --> 0:36:13.080
<v Speaker 2>tell me what I really have. And I have a

0:36:13.160 --> 0:36:15.960
<v Speaker 2>number of stories in the book of women with cancer

0:36:16.400 --> 0:36:18.480
<v Speaker 2>and blood clots who went to the doctor and were

0:36:18.480 --> 0:36:21.279
<v Speaker 2>told that they were just stressed instead of getting diagnosed.

0:36:21.480 --> 0:36:23.480
<v Speaker 2>So it makes sense that when I go to my

0:36:23.560 --> 0:36:26.960
<v Speaker 2>therapist after having a baby and I say I'm throwing

0:36:27.000 --> 0:36:30.040
<v Speaker 2>plates against the wall, what's wrong with me? She says,

0:36:30.120 --> 0:36:33.360
<v Speaker 2>welcome to motherhood. Being a parent is really hard. She

0:36:33.480 --> 0:36:35.160
<v Speaker 2>does not say the word autism to me.

0:36:38.840 --> 0:36:41.799
<v Speaker 1>When June is four and Marian is around thirty, she

0:36:41.880 --> 0:36:44.759
<v Speaker 1>goes with a friend to see one of her favorite comedians,

0:36:45.000 --> 0:36:48.880
<v Speaker 1>Hannah Gatsby, who themselves had been diagnosed with autism as

0:36:48.880 --> 0:36:51.799
<v Speaker 1>an adult and had made this a part of their act.

0:36:53.320 --> 0:36:57.200
<v Speaker 2>So Hannah Gatsby, who is just a gift to all

0:36:57.239 --> 0:36:59.880
<v Speaker 2>of us, was performing in San Francisco, and I go

0:37:00.280 --> 0:37:03.239
<v Speaker 2>to see their show with a friend and someone in

0:37:03.280 --> 0:37:07.480
<v Speaker 2>the audience shouts out, I love you, Hannah, and Hannah's

0:37:07.480 --> 0:37:12.319
<v Speaker 2>stumbles and you can see that they're visibly upset. And

0:37:12.360 --> 0:37:15.319
<v Speaker 2>I've seen comedians it wasn't even heckling. The audience member

0:37:15.360 --> 0:37:18.160
<v Speaker 2>was saying something kind, But it was the first time

0:37:18.320 --> 0:37:22.040
<v Speaker 2>I'd seen a live performer be jarred by something that

0:37:22.200 --> 0:37:25.600
<v Speaker 2>I would have been jarred by if I hear a noise,

0:37:26.239 --> 0:37:28.360
<v Speaker 2>it'll stop me and it'll take a minute for me

0:37:28.440 --> 0:37:31.920
<v Speaker 2>to get back on track. I can't filter out the

0:37:32.000 --> 0:37:36.600
<v Speaker 2>outside world. And Hannah was late diagnosed artistic, and they

0:37:36.640 --> 0:37:39.440
<v Speaker 2>say to the audience member, Hannah goes, can you please

0:37:39.520 --> 0:37:41.840
<v Speaker 2>just not do that? It really makes me lose my place.

0:37:42.200 --> 0:37:44.920
<v Speaker 2>I can't have anyone talking to me, just basically be quiet.

0:37:45.680 --> 0:37:49.000
<v Speaker 2>It just filled me with recognition. I felt like I

0:37:49.120 --> 0:37:53.440
<v Speaker 2>was seeing myself reflected in Hannah. I was really impressed

0:37:53.480 --> 0:37:56.320
<v Speaker 2>that they set a boundary in front of thousands of people.

0:37:56.360 --> 0:37:58.480
<v Speaker 2>I thought that was really cool that they could just

0:37:58.640 --> 0:38:02.200
<v Speaker 2>ask for what they needed and get it. Nobody was upset,

0:38:02.320 --> 0:38:05.560
<v Speaker 2>nobody noticed it. It didn't change anyone's perspective of the show.

0:38:06.520 --> 0:38:09.680
<v Speaker 2>And so I went home and I did not google

0:38:09.800 --> 0:38:12.719
<v Speaker 2>am I autistic. It would take another year for me

0:38:13.360 --> 0:38:16.920
<v Speaker 2>for those pieces to click into place. But it was

0:38:17.000 --> 0:38:22.319
<v Speaker 2>the first time I really felt myself, the whole of myself,

0:38:23.160 --> 0:38:28.239
<v Speaker 2>reflected in someone else. I felt, oh, Hannah's experience of

0:38:28.280 --> 0:38:31.920
<v Speaker 2>the world is also my experience of the world, and

0:38:31.960 --> 0:38:34.839
<v Speaker 2>it made me feel less weird. It did make me

0:38:34.880 --> 0:38:37.719
<v Speaker 2>feel less broken. And they did during their set talk

0:38:37.760 --> 0:38:40.400
<v Speaker 2>a lot about their autism diagnosis and what it felt like,

0:38:40.480 --> 0:38:43.880
<v Speaker 2>and they described it as being the only sober person

0:38:43.960 --> 0:38:46.480
<v Speaker 2>in a room full of drunk people, which I loved

0:38:46.520 --> 0:38:49.640
<v Speaker 2>and find very relatable. And so that was that Hannah

0:38:49.719 --> 0:38:53.359
<v Speaker 2>Show was the first puzzle piece clicking into place over

0:38:53.400 --> 0:38:56.560
<v Speaker 2>the next year before my autism diagnosis.

0:38:57.200 --> 0:38:59.759
<v Speaker 1>And it takes you a bit to get to that diagnosis.

0:39:00.080 --> 0:39:04.080
<v Speaker 1>After the Hannah Show, you at some point bring up

0:39:04.080 --> 0:39:07.759
<v Speaker 1>to the therapist you're then seeing, I wonder what do

0:39:07.760 --> 0:39:12.440
<v Speaker 1>you think about autism, and that therapist is quite dismissive

0:39:13.000 --> 0:39:16.200
<v Speaker 1>and pretty much says to you, because you're married and

0:39:16.239 --> 0:39:20.480
<v Speaker 1>you have a child, and you're charming, you can't be autistic.

0:39:21.120 --> 0:39:24.360
<v Speaker 1>And one of the things that you write that I

0:39:24.400 --> 0:39:27.960
<v Speaker 1>particularly highlighted that I love is I learned that autistic

0:39:28.040 --> 0:39:32.360
<v Speaker 1>girls are more likely to wear masks because all girls

0:39:32.520 --> 0:39:35.320
<v Speaker 1>are forced to wear them from the moment we open

0:39:35.400 --> 0:39:39.280
<v Speaker 1>our eyes. The only difference is what the mask is hiding.

0:39:39.680 --> 0:39:43.200
<v Speaker 1>So there's something that is so it's incredibly relatable, but

0:39:43.239 --> 0:39:47.040
<v Speaker 1>it also is what confused your therapist, who sounded like

0:39:47.120 --> 0:39:51.439
<v Speaker 1>a highly trained therapist who just was missing the boat

0:39:51.520 --> 0:39:54.719
<v Speaker 1>on this and had all sorts of other diagnoses for you.

0:39:54.840 --> 0:39:59.879
<v Speaker 1>But dismissed this, And something happened there which I would

0:39:59.880 --> 0:40:02.640
<v Speaker 1>love you to talk a little bit about, which was that,

0:40:03.160 --> 0:40:08.800
<v Speaker 1>for the first time, something tells you your own voice

0:40:09.480 --> 0:40:13.640
<v Speaker 1>overrides what she's saying, something tells you that she's wrong.

0:40:14.040 --> 0:40:16.880
<v Speaker 2>Yeah, it really is. And I think every woman, non

0:40:16.960 --> 0:40:20.560
<v Speaker 2>binary person can probably relate to this, which is, I

0:40:20.640 --> 0:40:24.920
<v Speaker 2>feel so overwhelmed in front of experts. I often just

0:40:24.960 --> 0:40:28.600
<v Speaker 2>feel like, Oh, they know better than me, especially doctors,

0:40:28.600 --> 0:40:31.799
<v Speaker 2>people with a lot of education. Who am I to

0:40:32.280 --> 0:40:37.680
<v Speaker 2>question this? She's right, I'm wrong. I felt so stupid

0:40:37.880 --> 0:40:41.000
<v Speaker 2>in that appointment. Oh you're charming. Autistic people have a

0:40:41.000 --> 0:40:43.640
<v Speaker 2>hard time living a normal life. That's what she said.

0:40:44.160 --> 0:40:46.279
<v Speaker 2>Of course, it didn't occur to me until later, and

0:40:46.280 --> 0:40:48.799
<v Speaker 2>this is what made me think, wait a minute, like,

0:40:49.120 --> 0:40:51.919
<v Speaker 2>I don't think she knows what she's talking about in

0:40:51.960 --> 0:40:55.800
<v Speaker 2>this particular area. That made me realize for the first

0:40:55.800 --> 0:40:58.600
<v Speaker 2>time that this one expert was not the beal and

0:40:58.760 --> 0:41:01.640
<v Speaker 2>all of my own body. And by this point I'm

0:41:01.719 --> 0:41:05.600
<v Speaker 2>thirty four. I had been dismissed so many times by doctors.

0:41:06.120 --> 0:41:09.960
<v Speaker 2>I felt powerful, Oh, I can talk to someone else.

0:41:10.320 --> 0:41:12.520
<v Speaker 2>I don't think this person has the answer. I need

0:41:12.560 --> 0:41:15.680
<v Speaker 2>to find someone who knows more about this, and then

0:41:15.960 --> 0:41:18.520
<v Speaker 2>it takes you a bit, but you do yes. I

0:41:18.640 --> 0:41:25.040
<v Speaker 2>called pretty much every developmental kind of clinic autism clinic

0:41:25.120 --> 0:41:27.920
<v Speaker 2>in Portland, and some of them hung up on me.

0:41:28.280 --> 0:41:30.920
<v Speaker 2>I had a couple people be just really surprised that

0:41:31.000 --> 0:41:34.000
<v Speaker 2>I was calling for myself and not my child. The

0:41:34.080 --> 0:41:39.320
<v Speaker 2>autism kind of diagnostic community is very much focused on children.

0:41:39.920 --> 0:41:42.520
<v Speaker 2>The assumption is that if you've made it to adulthood,

0:41:42.560 --> 0:41:45.560
<v Speaker 2>you're fine, that you don't need to know. There's no

0:41:45.719 --> 0:41:49.440
<v Speaker 2>reason to know. If you're not a student who needs accommodations,

0:41:49.960 --> 0:41:54.279
<v Speaker 2>or in an office and need accommodations, then why would

0:41:54.320 --> 0:41:56.239
<v Speaker 2>you need this information. So it was very hard for

0:41:56.280 --> 0:41:59.320
<v Speaker 2>me to find someone, but I did a lot of digging, honestly,

0:41:59.400 --> 0:42:03.239
<v Speaker 2>primarily on social media, just looking at other autistic women

0:42:03.239 --> 0:42:05.759
<v Speaker 2>who've been diagnosed late in life and trying to find

0:42:05.760 --> 0:42:08.799
<v Speaker 2>out who diagnosed them. And there are a number of

0:42:09.360 --> 0:42:14.520
<v Speaker 2>people that are specialists in autism who do adult assessments.

0:42:14.920 --> 0:42:17.040
<v Speaker 2>They are few and far between, but they do exist,

0:42:17.120 --> 0:42:20.000
<v Speaker 2>and so I lucked into finding doctor Marsh. She is

0:42:20.120 --> 0:42:23.320
<v Speaker 2>local to me, which is wild, and she spent thirty

0:42:23.400 --> 0:42:28.319
<v Speaker 2>years diagnosing children in California and Oregon as part of

0:42:28.360 --> 0:42:31.440
<v Speaker 2>the school system, So she did a lot of children's assessments.

0:42:32.080 --> 0:42:35.840
<v Speaker 2>And as she got older and learned more about the

0:42:35.840 --> 0:42:40.560
<v Speaker 2>people that were getting missed, primarily women and other marginalized genders.

0:42:40.800 --> 0:42:44.120
<v Speaker 2>Black and brown people also get missed, she realized that

0:42:44.200 --> 0:42:49.719
<v Speaker 2>she needed to be able to assess masked presentation. So

0:42:49.760 --> 0:42:53.640
<v Speaker 2>the autism that we hide. Doctor marsh was like, okay,

0:42:53.640 --> 0:42:56.200
<v Speaker 2>but what about the girls who are biting the inside

0:42:56.200 --> 0:42:59.680
<v Speaker 2>of their cheeks or flaring their nostrils and only talking

0:42:59.680 --> 0:43:03.480
<v Speaker 2>about the Spice Girls or Puerto Rico? What about them? Right?

0:43:03.640 --> 0:43:06.520
<v Speaker 2>Because those they are not represented in the media. We

0:43:06.840 --> 0:43:08.920
<v Speaker 2>don't talk about them, and we miss them. And so

0:43:09.000 --> 0:43:13.120
<v Speaker 2>I found her and she was amazing, and she had

0:43:13.880 --> 0:43:17.080
<v Speaker 2>a ton of tests, actually, and I think she did

0:43:17.120 --> 0:43:21.120
<v Speaker 2>about five of them. I think two or three were

0:43:21.320 --> 0:43:24.520
<v Speaker 2>the official AQ tests that a lot of doctors use.

0:43:25.000 --> 0:43:27.239
<v Speaker 2>And then because she's been doing this for thirty years,

0:43:27.239 --> 0:43:30.120
<v Speaker 2>she had developed her own tests and the ways that

0:43:30.239 --> 0:43:34.000
<v Speaker 2>she sees autism be hidden by some people after many

0:43:34.080 --> 0:43:36.560
<v Speaker 2>years of trying to hide, and so she has her

0:43:36.600 --> 0:43:39.480
<v Speaker 2>own tests. And we did two over zoom where she

0:43:39.520 --> 0:43:42.759
<v Speaker 2>would observe me and then ask me questions, and then

0:43:42.800 --> 0:43:46.440
<v Speaker 2>by the third session we had the big reveal. But

0:43:46.520 --> 0:43:49.319
<v Speaker 2>by that point, after talking to her for so long

0:43:49.400 --> 0:43:52.640
<v Speaker 2>and reading so many memoirs of other autistic women, I

0:43:52.719 --> 0:43:57.000
<v Speaker 2>knew already, and so her saying you're autistic. I wouldn't

0:43:57.000 --> 0:44:00.000
<v Speaker 2>say it was anticlimactic, but at that point there was

0:44:00.160 --> 0:44:01.160
<v Speaker 2>no doubt in my mind.

0:44:01.640 --> 0:44:02.839
<v Speaker 1>It was a confirmation.

0:44:03.520 --> 0:44:06.440
<v Speaker 2>Yeah, exactly. There's also a moment.

0:44:06.160 --> 0:44:08.680
<v Speaker 1>With doctor Marsh, whare the two of you talk about

0:44:09.160 --> 0:44:12.920
<v Speaker 1>whether to bring in your parents and you mull that

0:44:13.160 --> 0:44:15.759
<v Speaker 1>because there's a part of you other things, well, maybe

0:44:15.800 --> 0:44:19.480
<v Speaker 1>they would remember better than I would my early childhood,

0:44:19.560 --> 0:44:23.160
<v Speaker 1>and doctor Marsh says, I trust you. The way you

0:44:23.239 --> 0:44:28.239
<v Speaker 1>see yourself matters, and that was a revolutionary thing for you.

0:44:29.640 --> 0:44:33.759
<v Speaker 2>Yeah, Like, when are we ever told, especially by medical professionals,

0:44:34.280 --> 0:44:38.440
<v Speaker 2>I trust you and your interpretation of yourself. I trust

0:44:38.800 --> 0:44:44.520
<v Speaker 2>that your breathing issues, that your chest pain, that your anxiety,

0:44:44.680 --> 0:44:48.520
<v Speaker 2>that your sensory overwhelmed is real. When are we ever

0:44:48.680 --> 0:44:51.840
<v Speaker 2>told that? Truly, it was one of the most emotional

0:44:51.840 --> 0:44:54.600
<v Speaker 2>moments of my life to be told I don't need

0:44:54.640 --> 0:44:57.080
<v Speaker 2>to ask anybody else, I don't need to talk to

0:44:57.120 --> 0:44:59.759
<v Speaker 2>my parents, I don't need to bring in my f

0:45:00.000 --> 0:45:03.960
<v Speaker 2>fourth grade teacher, my experience of the world is valid,

0:45:04.160 --> 0:45:06.239
<v Speaker 2>and doctor marsh took that seriously.

0:45:10.120 --> 0:45:13.640
<v Speaker 1>Marianne's older brother is getting married, and a family wedding

0:45:13.760 --> 0:45:17.760
<v Speaker 1>is the definition of a lot. But by now Marianne

0:45:17.760 --> 0:45:20.839
<v Speaker 1>has shared her diagnosis with her mother, and her mother

0:45:20.960 --> 0:45:26.560
<v Speaker 1>surprises her with an extraordinarily empathic response. Her mother apologizes

0:45:26.920 --> 0:45:30.080
<v Speaker 1>for not having seen or understood the signs in Marianne's childhood.

0:45:30.680 --> 0:45:33.680
<v Speaker 1>That goes further and asks what can I do now?

0:45:34.120 --> 0:45:38.040
<v Speaker 1>What do you need? This makes it infinitely more possible

0:45:38.320 --> 0:45:42.640
<v Speaker 1>for marian to be herself now she has language tactics,

0:45:42.960 --> 0:45:45.040
<v Speaker 1>a safety net, a map.

0:45:46.920 --> 0:45:50.000
<v Speaker 2>I was shocked. My mother and I butt heads a lot.

0:45:50.160 --> 0:45:52.520
<v Speaker 2>We're very similar in a lot of ways and very

0:45:52.520 --> 0:45:54.840
<v Speaker 2>different in a lot of ways, and they don't often

0:45:54.920 --> 0:45:59.239
<v Speaker 2>line up, so most of our conversations are argumentative in

0:45:59.320 --> 0:46:03.040
<v Speaker 2>some way. It's really unpleasant, And it was really the

0:46:03.080 --> 0:46:05.520
<v Speaker 2>first time I felt like I didn't have to defend

0:46:05.640 --> 0:46:09.360
<v Speaker 2>myself or that she was really curious about my experience

0:46:09.400 --> 0:46:13.560
<v Speaker 2>without trying to fix me, but instead here where I

0:46:13.640 --> 0:46:16.360
<v Speaker 2>was coming from, and see me for who I was

0:46:16.440 --> 0:46:20.120
<v Speaker 2>and not who she wants me to be, and It

0:46:20.200 --> 0:46:23.239
<v Speaker 2>really was a complete shift in our relationship, and my

0:46:23.360 --> 0:46:26.200
<v Speaker 2>parents just moved across the country to be near me.

0:46:26.680 --> 0:46:29.040
<v Speaker 2>If you had asked me ten years ago whether I

0:46:29.080 --> 0:46:31.640
<v Speaker 2>wanted to live twenty minutes for my parents, I would

0:46:31.640 --> 0:46:34.480
<v Speaker 2>have laughed in your face. This is a shock to

0:46:34.520 --> 0:46:36.800
<v Speaker 2>me that I was okay with this, and it really

0:46:36.840 --> 0:46:39.759
<v Speaker 2>is a testament to the ways that my mom has

0:46:39.800 --> 0:46:43.640
<v Speaker 2>been able to learn who I am as an adult.

0:46:43.840 --> 0:46:47.000
<v Speaker 2>And really she has been so accommodating to me. She

0:46:47.760 --> 0:46:50.880
<v Speaker 2>doesn't tease me anymore for needing to be inside a

0:46:50.920 --> 0:46:54.760
<v Speaker 2>lot quiet, reading a book, needing an app She will

0:46:54.800 --> 0:46:57.799
<v Speaker 2>ask if I need to leave a loud place. Right.

0:46:57.880 --> 0:47:00.840
<v Speaker 2>She escorted me out of this pizza restaurant. There was

0:47:00.920 --> 0:47:03.400
<v Speaker 2>seventeen of us at the table and I'm having a meltdown,

0:47:04.160 --> 0:47:08.279
<v Speaker 2>And instead of telling me, oh, get your head out

0:47:08.320 --> 0:47:12.279
<v Speaker 2>of your hands, you're being rude, instead she asked, can

0:47:12.320 --> 0:47:15.040
<v Speaker 2>I take you home. I know a lot of autistic

0:47:15.080 --> 0:47:18.080
<v Speaker 2>women who have not had this shift with their mothers,

0:47:18.400 --> 0:47:20.640
<v Speaker 2>and I feel very lucky that I did. And a

0:47:20.640 --> 0:47:22.880
<v Speaker 2>big part of it is just her willingness to listen

0:47:23.440 --> 0:47:27.040
<v Speaker 2>and learn. She's read all the autism books now, it's amazing.

0:47:28.200 --> 0:47:32.000
<v Speaker 1>The label Marianne finally received liberated her in countless ways

0:47:32.440 --> 0:47:35.920
<v Speaker 1>connected her more deeply to her family and herself. But

0:47:36.040 --> 0:47:40.920
<v Speaker 1>labels can also be constricting, confusing, even reductive or restrictive.

0:47:42.000 --> 0:47:46.279
<v Speaker 1>Shortly after doctor Marsh gave Marianne her diagnosis, she wrote

0:47:46.320 --> 0:47:50.160
<v Speaker 1>about her experience on a popular online site. Then she

0:47:50.280 --> 0:47:54.040
<v Speaker 1>did what many writers avoid. She read the comments.

0:47:55.880 --> 0:47:59.120
<v Speaker 2>We were not designed for this much information about our work.

0:47:59.200 --> 0:48:00.920
<v Speaker 1>No talk about over stimulating.

0:48:01.280 --> 0:48:04.560
<v Speaker 2>Yeah, and a lot of the comments, the vast majority,

0:48:05.040 --> 0:48:08.320
<v Speaker 2>Like all comments, the vast majority were positive and lovely,

0:48:08.440 --> 0:48:11.759
<v Speaker 2>and so many different stories of women who'd been late

0:48:11.840 --> 0:48:17.520
<v Speaker 2>diagnosed with autism, adhd ocd endomitriosis, postpartum psychosis. Really, so

0:48:17.640 --> 0:48:20.960
<v Speaker 2>many incredible stories from women in the comments. And the

0:48:21.440 --> 0:48:23.759
<v Speaker 2>ten to twenty people who decided that they hated me.

0:48:24.080 --> 0:48:27.680
<v Speaker 2>It was both awful and I also really empathize with them.

0:48:27.760 --> 0:48:30.560
<v Speaker 2>I think the vast majority of them are parenting autistic

0:48:30.640 --> 0:48:34.640
<v Speaker 2>children who look or act so much more quote unquote

0:48:34.719 --> 0:48:37.600
<v Speaker 2>severe than me. And that's a whole other topic for

0:48:37.640 --> 0:48:41.520
<v Speaker 2>another day. But I get that it's probably really hard

0:48:41.640 --> 0:48:45.920
<v Speaker 2>if you're wrestling with this idea that you will be

0:48:46.000 --> 0:48:48.120
<v Speaker 2>taking care of your child for the rest of your life,

0:48:48.440 --> 0:48:51.000
<v Speaker 2>or maybe your child will never get married or have

0:48:51.120 --> 0:48:54.919
<v Speaker 2>children or have a job. I understand that to look

0:48:54.960 --> 0:48:57.759
<v Speaker 2>at someone like me who's married and has a child

0:48:57.840 --> 0:49:00.160
<v Speaker 2>and is charming and owns a house, right, that those

0:49:00.200 --> 0:49:05.480
<v Speaker 2>things feel fucking irritating and not fair. And so I

0:49:05.520 --> 0:49:07.440
<v Speaker 2>think part of the reason it was so hard to

0:49:07.480 --> 0:49:09.759
<v Speaker 2>read those comments just because I do get it to

0:49:09.880 --> 0:49:12.640
<v Speaker 2>a certain extent. And I think when you write about anything,

0:49:13.480 --> 0:49:16.320
<v Speaker 2>especially if you're a memoorist or an essays, you're writing

0:49:16.360 --> 0:49:19.800
<v Speaker 2>these really personal stories and it's not I wasn't writing

0:49:19.800 --> 0:49:23.280
<v Speaker 2>about their children or their experience. I was writing about mine.

0:49:23.320 --> 0:49:24.960
<v Speaker 2>And I think it took me a long time to

0:49:25.040 --> 0:49:28.799
<v Speaker 2>realize that. I think the kind of overarching comment that

0:49:28.840 --> 0:49:34.520
<v Speaker 2>people made is, well, if she's autistic and Rainman is autistic,

0:49:35.200 --> 0:49:37.680
<v Speaker 2>how can those two things be the same. What is

0:49:37.719 --> 0:49:40.560
<v Speaker 2>even the point? We shouldn't have to label people, stop

0:49:40.680 --> 0:49:44.239
<v Speaker 2>labeling everything. Let's just accept everyone for who they are.

0:49:44.880 --> 0:49:47.439
<v Speaker 2>And I guess I understand that, and like I'd love

0:49:47.480 --> 0:49:49.880
<v Speaker 2>for all of us to feel free to be you

0:49:49.960 --> 0:49:53.040
<v Speaker 2>and me, and in a perfect world we wouldn't need labels.

0:49:53.080 --> 0:49:55.239
<v Speaker 2>But I don't know what to tell you or her

0:49:55.520 --> 0:49:58.280
<v Speaker 2>that it really sucks to go through your whole life

0:49:58.280 --> 0:50:01.280
<v Speaker 2>feeling on the outside of everyone, like I just watched

0:50:01.320 --> 0:50:05.480
<v Speaker 2>all my friends get thrown baby showers and hold down

0:50:05.520 --> 0:50:08.960
<v Speaker 2>a job for more than six months and have friends

0:50:09.000 --> 0:50:11.719
<v Speaker 2>and go out after work, and to just be constantly

0:50:11.760 --> 0:50:14.560
<v Speaker 2>hammering myself with this idea that I was broken and

0:50:14.680 --> 0:50:18.880
<v Speaker 2>less than I really cannot express what a relief it

0:50:19.080 --> 0:50:22.640
<v Speaker 2>was to be given a reason why, and to not

0:50:22.680 --> 0:50:24.640
<v Speaker 2>only be given a reason why, but to be given

0:50:24.680 --> 0:50:28.439
<v Speaker 2>a community, a built in community of neurodivergent women who

0:50:28.520 --> 0:50:32.160
<v Speaker 2>also experienced the world that I did. And essentially those

0:50:32.200 --> 0:50:34.319
<v Speaker 2>commenters were trying to take that away from me and

0:50:34.360 --> 0:50:36.880
<v Speaker 2>trying to take that away from other autistic people that

0:50:37.000 --> 0:50:40.160
<v Speaker 2>for whatever reason, we shouldn't get to have this information

0:50:40.200 --> 0:50:43.000
<v Speaker 2>about ourselves. It should be kept secret. At the time,

0:50:43.280 --> 0:50:44.520
<v Speaker 2>it was very hurtful.

0:50:45.040 --> 0:50:50.720
<v Speaker 1>It caused you briefly to doubt yourself, like to feel

0:50:50.719 --> 0:50:52.600
<v Speaker 1>like you needed to get a second opinion.

0:50:53.160 --> 0:50:55.359
<v Speaker 2>I went through the whole process again. I was like, Oh,

0:50:55.640 --> 0:51:00.560
<v Speaker 2>maybe they're right, maybe I'm not autistic, maybe marsh got

0:51:00.560 --> 0:51:04.280
<v Speaker 2>it wrong. So I spent another one thousand dollars trying

0:51:04.320 --> 0:51:07.560
<v Speaker 2>to get another answer. So I found another specialist outside

0:51:07.560 --> 0:51:09.600
<v Speaker 2>of the United States, so I could get this more

0:51:09.719 --> 0:51:13.759
<v Speaker 2>like unbiased perspective. I didn't tell her about my first diagnosis.

0:51:13.800 --> 0:51:16.640
<v Speaker 2>I did all the tests, I did a huge survey,

0:51:17.160 --> 0:51:20.600
<v Speaker 2>long interview with her, and it was the same thing. Yes, absolutely,

0:51:20.600 --> 0:51:24.240
<v Speaker 2>you're autistic. It was definitely validating to do it again

0:51:24.280 --> 0:51:26.760
<v Speaker 2>and to feel like I had this armor. It's helpful

0:51:26.840 --> 0:51:30.479
<v Speaker 2>to have two diagnoses, but it was unnecessary. I knew

0:51:30.480 --> 0:51:32.880
<v Speaker 2>what I knew about myself, and it's one of the

0:51:32.880 --> 0:51:36.840
<v Speaker 2>reasons I don't really use the internet anymore because it's minefield.

0:51:40.080 --> 0:51:42.840
<v Speaker 1>It has now been four years since her diagnosis, and

0:51:42.880 --> 0:51:46.919
<v Speaker 1>in that time life has vastly improved from Marian, as

0:51:46.920 --> 0:51:49.040
<v Speaker 1>she puts it, it's like night and day.

0:51:50.400 --> 0:51:53.200
<v Speaker 2>So June is eight and she's about to finish second grade,

0:51:53.239 --> 0:51:56.479
<v Speaker 2>which is so sad. She's so big. She talks about

0:51:56.480 --> 0:51:59.000
<v Speaker 2>my autism all the time. She tells everyone she'll be

0:51:59.040 --> 0:52:02.720
<v Speaker 2>at school and I have the unit on neurodivergence, because

0:52:02.719 --> 0:52:04.600
<v Speaker 2>of course they do. We live in Portland, Oregon, and

0:52:04.600 --> 0:52:07.520
<v Speaker 2>they all have their little fidget spinners and June as well.

0:52:07.520 --> 0:52:09.799
<v Speaker 2>My mommy's autistic, and she knows all about it, and

0:52:09.840 --> 0:52:13.080
<v Speaker 2>she talks about her own needs and her own accommodations

0:52:13.120 --> 0:52:17.799
<v Speaker 2>that she wants, and it's amazing. And I work from home,

0:52:18.480 --> 0:52:21.520
<v Speaker 2>I write, I don't have to talk to anyone, and

0:52:21.560 --> 0:52:24.000
<v Speaker 2>it's great. I have a door that closes. There's no

0:52:24.200 --> 0:52:29.399
<v Speaker 2>like frat party beers after work. I really don't think

0:52:29.400 --> 0:52:32.680
<v Speaker 2>about being autistic anymore. It doesn't cross my mind that often.

0:52:33.120 --> 0:52:37.040
<v Speaker 2>I honestly rarely even talk about it anymore, because my

0:52:37.200 --> 0:52:42.280
<v Speaker 2>whole life has been built inside these fences. I think

0:52:42.800 --> 0:52:47.719
<v Speaker 2>that keeps me from rarely being overstimulated. I have the

0:52:47.760 --> 0:52:50.160
<v Speaker 2>support system that I need to take care of me.

0:52:51.000 --> 0:52:54.360
<v Speaker 2>I can be a better partner and a better mom

0:52:54.440 --> 0:52:56.880
<v Speaker 2>and a better writer. Now that I have this information,

0:52:57.560 --> 0:53:00.440
<v Speaker 2>it's just been so freeing to talk about it without

0:53:00.480 --> 0:53:03.560
<v Speaker 2>being twisted up in knots about it. It also helps

0:53:03.600 --> 0:53:05.680
<v Speaker 2>that the world knows more about autism now that it's

0:53:05.719 --> 0:53:08.560
<v Speaker 2>actually not that strange. And I meet women at least

0:53:08.600 --> 0:53:10.640
<v Speaker 2>once a week someone tells me that they're autistic, and

0:53:10.680 --> 0:53:14.120
<v Speaker 2>it does feel very much. Especially in Portland, Oregon, part

0:53:14.239 --> 0:53:17.600
<v Speaker 2>of our language, the way that we talk about neurodivergence,

0:53:17.640 --> 0:53:21.680
<v Speaker 2>feels way different, and I think that's just impacted the

0:53:21.719 --> 0:53:27.120
<v Speaker 2>ease of my life a lot.

0:53:27.640 --> 0:53:32.880
<v Speaker 1>Here's Marianne reading one last passage from her beautiful, important memoir.

0:53:35.080 --> 0:53:38.520
<v Speaker 2>At thirty four, I discovered that no power grows while

0:53:38.560 --> 0:53:42.239
<v Speaker 2>cowering in the dark. Learning and sharing the word autism

0:53:42.320 --> 0:53:47.320
<v Speaker 2>would heal decades of wounds, dozens of relationships, a lifetime

0:53:47.360 --> 0:53:51.600
<v Speaker 2>of self hatred. Six letters gave language to the terrain

0:53:51.680 --> 0:53:54.920
<v Speaker 2>of my life. I could read the original transcript of

0:53:54.960 --> 0:53:58.480
<v Speaker 2>myself now a palimpsest of every person I'd ever tried

0:53:58.520 --> 0:54:03.120
<v Speaker 2>to be. The Centers for Disease Control and Prevention estimates

0:54:03.120 --> 0:54:07.120
<v Speaker 2>that about one in thirty six people is autistic. That said,

0:54:07.200 --> 0:54:10.720
<v Speaker 2>we know autism goes undiagnosed and marginalized genders and people

0:54:10.719 --> 0:54:13.160
<v Speaker 2>of color, so we can assume this number to be

0:54:13.200 --> 0:54:17.839
<v Speaker 2>significantly higher. Women like me are being diagnosed every day.

0:54:18.800 --> 0:54:22.560
<v Speaker 2>We are everywhere, hiding in plain sight, wearing the masks

0:54:22.600 --> 0:54:26.280
<v Speaker 2>we were given as children. My heart aches for them

0:54:26.560 --> 0:54:29.640
<v Speaker 2>and for her, the marian who begged to be changed

0:54:29.680 --> 0:54:33.400
<v Speaker 2>at nine and nineteen, who ran into classroom closets and

0:54:33.440 --> 0:54:38.239
<v Speaker 2>office bathrooms. Some day I would tell her, you will

0:54:38.239 --> 0:54:40.640
<v Speaker 2>have a name for what you are, and you will

0:54:40.680 --> 0:54:42.400
<v Speaker 2>never again have to keep it hidden.

0:54:49.239 --> 0:54:53.279
<v Speaker 1>Family secrets is a production of iHeartRadio. Molly's Accur is

0:54:53.280 --> 0:54:56.480
<v Speaker 1>the story editor and Dylan Fagin is the executive producer.

0:54:57.719 --> 0:54:59.760
<v Speaker 1>If you have a family secret you'd like to share,

0:55:00.120 --> 0:55:02.560
<v Speaker 1>please leave us a voicemail and your story could appear

0:55:02.560 --> 0:55:06.000
<v Speaker 1>on an upcoming episode. Our number is one eight eight

0:55:06.000 --> 0:55:10.200
<v Speaker 1>eight Secret zero. That's the number zero. You can also

0:55:10.320 --> 0:55:15.120
<v Speaker 1>find me on Instagram at Danny Ryder. And if you'd

0:55:15.120 --> 0:55:17.600
<v Speaker 1>like to know more about the story that inspired this podcast,

0:55:18.000 --> 0:55:38.040
<v Speaker 1>check out my memoir Inheritance. For more podcasts from iHeartRadio,

0:55:38.160 --> 0:55:41.680
<v Speaker 1>visit the iHeartRadio app, Apple Podcasts, or wherever you listen

0:55:41.680 --> 0:55:42.680
<v Speaker 1>to your favorite shows.