June 26, 2025 • 55 mins
Marian’s body knows something her brain does not. It takes years before she finally has the language to define herself. To be herself.
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Speaker 1 (00:00):
Family Secrets is a production of iHeartRadio.
Speaker 2 (00:06):
I see that girl with her cow licks and her
sleepy eyes, trying so hard to be the peppy, energetic,
playful kid everyone wanted her to be, and I imagine
taking her in my arms like some romance hero and saying,
you are not broken. There is a better, more beautiful
word for what you are.
Speaker 1 (00:27):
That's Marianne Chambari, Portland, Oregon based essayist and author of
the recent memoir A Little Less Broken. Marianne's is a
story of a very particular kind of secret, the kind
so hidden that it seems possible that it doesn't exist
at all, and yet shapes the course of an entire life,
(00:49):
until finally it is named. I'm Danny Shapiro, and this
is Family Secrets. The secrets that are kept from us,
the secrets we keep from others, and the secrets we
(01:12):
keep from ourselves. Tell me about the landscape of your
childhood in Old Greenwich, Connecticut.
Speaker 2 (01:21):
I think when I look back, it honestly feels almost
like I'm watching the movie of my childhood. We had
this house that butted up against the woods, and I
spent a lot of my childhood running through those woods.
Make little soup out of wild onions. And it wasn't
really until I was an adult that I looked back
at a lot of those kind of idyllic memories and
(01:45):
saw them for what they were, which for the most
part was me trying to hide from people and me
feeling like I was not like everybody else. I did
not want to be around my family, as loving and
wonderful as they are. I am the only girl, and
I have three younger brothers, and there's my parents.
Speaker 1 (02:07):
So it was a.
Speaker 2 (02:07):
Big, very bustling house right near downtown Old Greenwage, and
I describe it as the Weasley House from Harry Potter.
It was like tilting to one side as my parents
built up. Our house was a shack compared to the
rest of the houses in Greenwich. I was very serious
compared to my siblings who were always yelling and having
(02:28):
nerf fights and playing video games, and I was quiet
and reading all the time and wanting to escape into
the woods. And so most of my childhood actually feels
like there's two sides of it. There's the movie that
I'm watching, the very pleasant ville idyllic suburban American childhood,
(02:49):
and then there was the interior of what was happening
within me, which was that I hated myself most of
the time and I felt separate from the rest of
my family. My dad was a journalist. We moved to
Connecticut when I was five or six. He got a
job at the New York Times, so it was his
absolute dream job. I think he was the editor of
the Connecticut section for a while before it no longer existed.
(03:13):
He wrote a column called family Man, where he wrote
about being a dad and about me and my siblings.
And I found a note. So my dad is a
bit of a paper hoarder. And they recently sold the
house in Connecticut to move out to Oregon, and my
dad gave me boxes of old papers that he's kept
over the years, and I was going through them literally
(03:35):
just two days ago, and I found this little scrap
of paper where he had been transcribing the conversations that
I was having with my friends at my third grade
birthday party. And he saved that transcription, so it says
I have a crush on Cory. Don't tell anyone. I
would be so embarrassed if anyone knew. And I very
(03:57):
vividly remember a week after that birthday, his family man
column was about my third grade slumber party and all
the boys we had a crush on, And all my
friends came to school the next day and were livid
with me and livid at my dad because their parents
had told them. Oh, Marian's dad wrote an article in
(04:17):
such and such a newspaper about all the crushes you have.
And I already did not have very many friends. But
that was really that killed any chance I had of
having any sort of like real intimate relationships with girls
in elementary school especially. So yes, my dad was a
journalist but it came with some very serious downsides for
a while.
Speaker 1 (04:37):
So he named names.
Speaker 2 (04:38):
Yeah, he named names. You didn't even change them, like
he wasn't he was not thinking. So old greenwage is.
I describe it as the love child between Norman Rockwell
and a boat shoe. All of my friends had sail boats,
and they belonged to a beach club. But it's the
type of wealthy that you wouldn't necessarily know it by
(04:59):
looking at someone. And everyone always wore the same clothes,
right they're wearing their Nantucket reds. When I was in
middle school, I think everyone started wearing ug boots and
I was devastated to not have a pair of ug boots. So,
by its very nature was very exclusive. You were on
the outside if you didn't have the right clothing or
(05:20):
live in the right house. Even from an extremely young age,
it would be very obvious who was one of us
and who wasn't, and I obviously was not. My parents
did not care about ugs. We shopped at DSW and
my mom is very thrifty and very environmentally conscious before
it was cool, and so she was always hand washing
(05:42):
our ziploc bags and hanging them to dry around the house.
There was always food that had gone off in the fridge,
for sure. So I was already different in my family
simply by the nature of my gender, right, I was
the girl, and then I had these younger boys. I
was different because my parents were journalists and not hedge
(06:03):
fund manaitures, and so in Greenwich, if you're not in finance,
you're poor, right, which is obviously not true. We were
like very comfortably middle class, but like it felt that
way growing up. I already had two strikes against me.
So on top of that, my mom is also Puerto Rican,
so then there's this racial element as well. I loved
(06:25):
talking about Puerto Rico. Growing up, I learned Spanish and
English at the same time. I would wear my abuillos guayabra,
which is this like very typical kind of Puerto Rican
and Cuban white button down shirt, and I would wear
it to school. I would bring mpanadas to school, So
then there's the kind of racial difference. And then on
top of all of that, I was quote unquote weird.
(06:49):
I talk a lot. I have no filter, and so
I would often just say the thing that I was
feeling in any given moment. There was this kid. He
was very rich, and everyone called him rich bitch behind
his back. That was his nickname, which is so silly
because it's Greenwich, Connecticut and everybody was rich, but he
(07:10):
was richer than all the other rich kids, and I
did not realize that I couldn't just call him rich
bitch to his face, and so I did, which is
when the vice principal took me to her office and
said that I was the worst kid in fourth grade.
And it's so bonkers to me now because I did
not feel bad. I got good grades, I was smart,
(07:33):
I showed up on time. I was not the one
inventing the nickname rich Bitch. I was not the one
throwing kickballs at people's heads at recess. I was not
one of the bitchy popular girls who was constantly mean
behind other kids' backs. I wasn't passing shitty notes. But
because I didn't have a filter and I couldn't pretend
(07:55):
to be someone I wasn't in the way that a
lot of the kids could, it was immediately obvious to
people that I was different, and different was bad. I
didn't remember this until recently, but I didn't have a
lot of control over my body in the same way
that other kids did. So a very easy example is
said I was terrible at sports, right, not a huge deal.
(08:17):
Lots of people are terrible at sports. I would be
the one in the far far outfield picking dantellions or whatever.
But I also had constant pea accidents all the way
until I was in middle school. Actually, I remember in
first or second grade meeting my next door neighbors for
the first time, and they were so funny. Oh my god,
(08:38):
I was obsessed with them right away, and they were
talking and joking to me, and I was just laughing
so hard and completely not conscious of the fact that
I needed to pee, and I just completely wet myself
in front of these like very cool, funny kids. I
was probably in second grade, so let's say I was
eight years old, but that would continue, right. It happened
(08:59):
in class. It happened probably in third or fourth grade
at a friend's house. Same thing. It felt like my
body and my brain were constantly divided, and I wasn't
often aware of what was happening to my body until
it was too late, And most of the time it
involved peeing on the floor of my friend's houses up
(09:21):
until I was thirteen. So the most recent memory I
was thirteen or fourteen. I was trick or treating, you know,
it's that year when everyone tells you you're too old
to trick or treat, but you go anyway. And we
were like knocking on someone's door, and as soon as
she opened, it occurred to me, Oh my god, I
have to pee so bad, And I was like, can
I use your bathroom? And I sprinted past her into
her bathroom, peed all over her bathroom floor, and then
(09:44):
just left it there. God, it's so embarrassing in eindsight,
but really I didn't even remember that these things had happened.
Until the past couple of years. Really well, that.
Speaker 1 (09:53):
Makes so much sense because it seems to me correct
me if I'm wrong, But there's this kind of like
disc connect between interior and exterior, between body and brain,
between brain and environment that like the way that you
describe it, and this profound sort of excess of stimulation.
(10:19):
I mean, one of the things that struck me that
you wrote about is there's some really wonderful sprinkling through
of theory In your book and The Invisible World's theory
of autism, the researchers Kamela and Henry Markram suggest that
autism isn't just a differently wired brain, but a brain
with more wiring in other words, supercharged. And so it
(10:43):
feels like with that supercharged brain, I can imagine that
it would disconnect from just the oh I need to
pee in advance.
Speaker 2 (10:52):
I had really never thought about it that way. That
is an extremely articulate explanation of what I think is happening. Yeah,
I think I think that's exactly it. The example I
always use is just when I'm working from home, right,
I'm in my office, I'm trying to write and a
car slashes by outside and my next door neighbor is
hammering at his roof again for the millionth time, and
there's a dog barking across the street, and my husband's
(11:14):
chair is squeaking upstairs, and my cat is trying to
get into the office, and all of those things are
competing for an equal amount of attention, and it's very
hard to just focus on one of those things, and
so what ends up happening is other stuff gets completely forgotten. So,
for example, my hands and feet will get really numb
because I haven't moved them, or I'll have to go
(11:37):
to the bathroom and then not realize until it's an emergency.
And so I can imagine on Halloween when you're thirteen,
you're laughing with your friends and you're full of candy
and you've got a sugar rush and it's freezing cold outside.
The having to pee is just it's being drowned out
by the fifty other things that are competing for your attention.
(11:59):
In today's world, this cluster of behaviors would likely be
recognized earlier, a diagnosis made along with accommodations. Perhaps now
a young Marian could grow up truly knowing herself, accepting herself.
But this is not remotely what happened for Marian. All
the unknowns were manifesting in her body, her environment, all
(12:21):
of which were deeply misunderstood by those around her. And
she misunderstood herself too, of course she did. She had
no map. It's terrible for people to misunderstand you. It's
terrible to be told that you're the worst kid in
fourth grade when you really just thought you were just
repeating what everyone else was doing. You don't see how
(12:43):
it's different, right, But the misunderstanding yourself, I really did.
I just felt like I was insane constantly for decades.
I did not know that the constant pe accidents, the
blunt honesty, the knee to retreat to small, dark, quiet places,
the stimming, that these things were part of a collection
(13:07):
of conditions that's called autism. And so the stimming is
a great example. So for a really long time, I
thought that I had ticks or later turets. That was
one of my many diagnoses in my twenties was that
I had tourets because I was very often twitching my face.
I would blink really hard and then flare my nostrils,
(13:29):
and I remember the first time someone called me out
on it was a guy that I had a crush
on in sixth grade, and he said, why do you
move your face all weird like that? You look like
a rabbit. And so there was this very visible indicator
from very early on that I was different, that there's
something wrong with me. And again I just internalized that.
Over the years, I just internalized all the ways that
(13:51):
I was different, and because I didn't know I was autistic,
I just thought there was something wrong with me. I
was broken. I'm weird, I'm twitchy, I'm gross, I'm moody,
like name fun adjective. And I had hurled that at
myself constantly.
Speaker 1 (14:09):
Marianne writes, at thirteen, all I knew was what I
had been told. And there are only so many times
you can tell a girl she's broken before she starts
to believe it. This has such a universal ring of truth,
doesn't it, Because as children, as teenagers, we tend to
define ourselves by who we're told we are. Marianne's been
(14:32):
told she's weird and bad, that she's just too much,
and now she's a teenager, and some of this starts
manifesting itself as anger. It's a perfect storm. She smashes things,
breaks things, and also is being broken diagnoses all of
them wrong are hurled at her too, anger, management problems,
(14:54):
emotional dysregulation. For now, her bones know, she doesn't have
the language.
Speaker 2 (15:02):
It's like growing up thinking that you're one race and
then you're not, or thinking that your parents are your
biological parents, and then you find out you're adopted. It's
like this core piece of information, even if no one
was quote unquote keeping it from you, it's still there,
you still know it. I think a lot about Sylvia Plath. Actually,
a writing teacher of mine was explaining that many people
(15:25):
in Sylvia's family had killed themselves, but nobody told her,
and so she's feeling the feelings, the depression and the
suicidal ideation, all of that, but not knowing why. And
obviously this was ages ago, and I cannot diagnose anyone
through history. But I just feel like hidden knowledge exists
(15:45):
in our bodies, and if we're given access to it,
if we know why we are the way we are, like,
could it save us? Could it have saved Sylvia to
know that it wasn't just her, that this ran in
her family, that this thing that she's feeling is genetic.
It has nothing to do with her or something that
she's quote unquote doing or not doing wrong. And I
(16:07):
think more information is only a good thing.
Speaker 1 (16:12):
We'll be back in a moment with more family secrets.
Marian goes to college in North Carolina at Davidson and
(16:33):
it's the first extended time she's been away from her family.
She travels to the UK for a semester abroad, which,
when she falls in love with a man named Lewis,
turns into a much longer period of time overseas once
she graduates and moves in with him, first to London,
then to New Zealand, where his family lives.
Speaker 2 (16:53):
So, yeah, I moved in. I'm twenty five years old.
I have moved across the world with my boyfriend. We
had this beautiful romantic love story in London, straight out
of some rom com with Hugh Grant. He even looked
a little bit like Hugh Grant. And everything was great
when we're living in London and we're both in this
city that we love and living in separate apartments. But
(17:16):
once we were in New Zealand, I'm confronted with so
many differences. I don't have a job, I'm living with
his parents, who are the loveliest human beings, but are
still someone else's parents and you're in their home. I'm
in a country that I'm completely unfamiliar with, and the
houses infested with cockroaches, which are my biggest, absolute, biggest fear.
(17:39):
I became a completely different person from the woman that
he met in London. I went from fun, loving and
adventurous and this performance of a sexy American to suddenly
being afraid all the time. Constantly, I was afraid of
his parents. I would hide in his room so that
I wouldn't have to talk to them. I would stay hungry
(18:02):
and pretend that I didn't want dinner because I just
couldn't keep up that performance of the fun American girlfriend.
And the cockroach is the constant. If you've ever had
a phobia, it's so silly saying it out loud, because
it's just a bug. But I cannot express the sense
of fear that I lived in every second of every
(18:24):
day in that house, like I could not move, I
couldn't get out of bed or go to the bathroom
without scouring every single corner and every wall for a cockroach.
And a lot of the time because there were a
lot of cockroaches, there would be one, and it felt
like being electrocuted, and so that took everything out of me.
(18:47):
And it wasn't until years later that I discovered this
idea of spoon theory, which was created by a woman
with lupus I believe, who was explaining to her friend.
They're having dinner and the friend is trying to understand
what it's like to live with lupus, and so Christine
I think is her name, hands a bunch of spoons
to her friend and says, Okay, these are your spoons
(19:08):
for the day. Everything you do takes a spoon. You
want to get up and wash your hair and put
on makeup and get dressed, that's going to be a spoon.
You need to commute to work, Oh, but that would
usually be a spoon, But there's an accident and there's
a lot of traffic and it takes an hour and
a half. That's actually going to cost you three spoons.
By the time you get to work, you're halfway through
your spoons already. And by the end of the day,
(19:30):
if you're out of spoons, you cannot feed yourself, you
can't go to the gym, you can't go out with friends,
you collapse into bed without brushing your teeth. That's how
I lived, that's how I continue to live. And so
living in New Zealand with parents who were not my own,
who wanted to talk to me all the time, and
I had to perform and be a good house guest,
(19:51):
essentially in my own home for six months, followed by
living with a phobia, it meant that I was completely incapacitated.
I didn't work, I barely got out of bed, and
me and the boyfriend lasted six months after I moved
to New Zealand because I am with a person now
who deals with that all the time. But you know,
at twenty five, when you're just learning how to be
into relationships, that was not something that he was capable
(20:13):
of handling. And because I didn't understand it, I didn't
understand that my spoons were being blown by lunchtime, there
was no way to fix it. And this is what
I'm talking about, how knowledge of yourself is so much power.
Is I live a very different style of life now
that allows me to have enough spoons for the whole day.
Speaker 1 (20:31):
Marion stays in New Zealand for a couple more years.
She and Lewis are broken up, so she moves into
her own place, not a cockroach in sight. She lasts
as long as she can there, grateful for the grand adventure,
but eventually must move back to the States. She goes
to San Francisco, where she's gotten a job at a
travel tech startup. On paper, it's a fantastic place to land,
(20:55):
a great opportunity. That's not lost on Marian.
Speaker 2 (21:00):
Tech is a hard place if you have sensory issues.
So the first office that I worked at was like
a preschool jungle gym. It was a huge warehouse, completely
open concept. There was an adult swing set hanging from
the rafters and one of those like parachutes that they
(21:20):
use in preschools, like pinned to the ceiling. There were
quote unquote family dinners for breakfast, lunch, and dinner. They
wanted to keep you in the office. And it's so loud,
and everyone was just on a lot of drugs. They
were constantly partying. It was like a frat house, but
a job that you got paid for and lots of
(21:41):
people love that. There is a whole culture of that
in San Francisco. But as someone with extreme social anxiety,
I can be hard to be around and so I'm
watching all my coworkers have fun together while I scowl
at my desk, and it's very loud, So how do
you concentrate? And speaking of spoons, they were just exhausted
(22:03):
after an hour of being in the office. I used
to come home after that job every day and just
sob for hours, and I just didn't understand how people
had careers, really, And so after that job, I got
another tech job and then another tech job, and they
were all exactly the same. The offices were all open
concept and loud, and it was primarily focused on socializing.
(22:27):
And there was this expectation that in order to be
a good employee you had to be social and fun
and I am neither. I'm just not those things. I
am a hard worker and I'm smart, but social and
fun are not my best qualities. And so I would
often get feedback from my bosses that I needed to
smile more, that I needed to be more pleasant, that
(22:49):
I was too harsh. Every job I've ever had, I
have either quit very quickly because of the social demands
and the sensory input, or I've been fired because I'm
quote unquote unpleasant or too blunt. And when you.
Speaker 1 (23:03):
Would be like, quote unquote unpleasant or too blunt. That's
how you were being perceived. But was that how you
perceived yourself or was there a disconnect between the way
that you felt you were being and the way that
other people saw you being.
Speaker 2 (23:18):
That is such a good question. I really thought I
was being a good employee, that I was being smart.
I would give my all to these jobs, and I
cared about them. I absolutely drunk the kool aid at
every tech company that this is going to be the
next Facebook. Right, They all talked like such a big game.
But one example of this is I was working at
(23:39):
this travel startup and I had been invited by my
boss to go to the CEO's house, his fancy Soma
apartment in downtown San Francisco and have like a brainstorming day.
And it would be eight hours with the head of marketing,
the head of engineering, and the head of product and
the CEO and me. I was making barely any money.
(23:59):
I was a marketing assistant, and I felt, oh my god,
I finally made it. They see how valuable I am.
I'm so capable, this is the beginning of a great career.
And I was so happy to go and so I
really contributed. I don't know what their expectations of me were.
That's part of the problem is I assumed that I
(24:20):
was being invited as an equal, but maybe their assumption
was that I was coming to take notes. I really
don't know. And so I show up and I'm at
this guy's kitchen table and we're all brainstorming. And part
of my job was monitoring our community. I managed our
social media accounts that I'd go into deep into Reddit
and Facebook threads and collect information on how people felt
(24:41):
about our app, and I presented that information. Oh, everyone
hates the fact that there's not a calendar feature. Why
are we focusing all of our time and attention on
this random product that nobody wants when we should be
doing the calendar feature. And I think there's just something
about my tone that makes people feel like I'm talking
down to them or criticizing them. My tone of vois
(25:04):
during an interview is obviously very different from how it
is in a meeting. Some people are surprised when I
say that I'm unpleasant, but I think it's just my
tone comes across as rude or harsh, And part of
that might be because I'm a woman. Right, and that
was I think this was the same year that lean
In came out, and so I interpreted this year too
harsh as a sexism problem and not necessarily that I
(25:25):
was neurodivergent, if that makes sense. I think it's probably
a bit of both. But yeah, So I had this meeting,
I gave this feedback. I butted into the conversations. I'm
interrupting because I know best, right, I'm the one that's
been moderoring the community. I know the things. And the
next day I get an email from my boss, very short,
very kurt, saying you were incredibly inappropriate during the meeting yesterday.
(25:47):
You owe everyone in an apology, and I was completely shocked.
I'd thought I'd done an amazing job. It always came
as a shock to me when I was told that
I was being difficult.
Speaker 1 (26:01):
In twenty thirteen, Marian meets a man named Eliot on
the dating site Okay Cupid. It is in fact his
first ever online date, and in a life that has
had its share of privilege but also a fair amount
of difficulty, this is an extraordinary blessing. Eliot is her
soulmate and just simply gets Marian right off the bat.
(26:24):
He doesn't have the language, and neither does she, but
somehow he knows what she needs and offers it to
her with a beautiful, simple generosity of spirit and love.
For example, one day, Elliot comes home to discover that
Marian has had a particularly hard time. He asks if
she's okay, and she says, no, I'm feeling a little
(26:45):
bit autistic. The word just pops out. She just says it,
almost as a joke. And then Elliot asks, do you
want me to lie on you? And she answers yes please.
His weight on her is like a prescription, and for
what her nervous system already knows, a classic example of
a secret she was keeping from herself, something her body
(27:07):
knew but her brain couldn't.
Speaker 2 (27:11):
It was so crazy to me because that was ten
years ago. This was well before brook Lennon was selling
one hundred and fifty dollars weighted blankets. This was before
autism and women was like very much part of our conversation.
I didn't even know that much about autism. I don't
know why I said that, but it just came out
(27:32):
of me. I'd had some experience with autistic people. I
did a lot of babysitting when I was younger and
some of the kids were autistic. I'd watched rain Man
with everybody else, so like I understood pieces of it,
but I wasn't thinking about it in that way, and
it would be ten years before i'd get actually officially
diagnosed as autistic. But something in me knew that I
(27:53):
needed the pressure of his body. I think it's called
proprioceptive feedback. That lots of autistic people like to be squeezed.
Temple Granted invented a hug machine fifty years ago because
she wanted that squeezing pressure, and something in my body
knew that I needed it. But more importantly, I knew
(28:14):
that Elliott would give it to me without me feeling
like shit about myself. In New Zealand with Lewis, if
I saw a cockroach and started crying, fifty percent of
my feelings in that movement would be, Oh my god,
he's gonna leave me. I'm so pathetic. What is wrong
with me that I can't handle a bug? He hates me.
I'm making his life a living hell. Whereas I can
(28:37):
be with Elliot and have a meltdown and have my
nervous system just regulated. And all the therapy talk, and
I can say, can you please lay on me? And
no part of me is going to think that he
is going to leave or that he won't love me
because of it. He's always offered himself to me without
any sort of judgment or expectation, and it's my favorite
(29:00):
thing about him. We'll be right back.
Speaker 1 (29:28):
Marian and Elliot have a baby, a daughter named June.
After June is born, Marian experiences a very brief honeymoon
period of early motherhood, a state of absolute ease and tranquility.
But brief is the keyword here. Soon it becomes extremely hard,
(29:48):
because having a baby and then a toddler is nothing
if not a prescription for overstimulation. Marian thought the tech
offices in Silicon Valley were overstimulating, but now now there's this.
Can you tell me about the baby shark incident?
Speaker 2 (30:07):
Oh boy, baby shark is the work of the devil.
I'm convinced. It is a terrible thing that the world
has given to parents. And my daughter was obsessed with it.
So she is, I don't know one and a half
or two, and she was very colicky and she had
a lot of big feelings as two year olds do,
and she's telling me that she wants to listen to
(30:28):
Baby Shark. I'm exhausted. I'm at the end of my rope.
I do not want to listen to baby Shark. I
can't do it. But she's screaming and crying and screaming
and crying, and so that is already over stimulation. And
at this point I have to decide which is worse,
the screaming of a baby or baby shark. And I
decide that baby Shark is not as bad, so I
put on Baby Shark. But she doesn't want to listen
(30:50):
to Baby Shark. Baby Shark is the worst. She starts
screaming and crying and screaming and crying. We go back
and forth like this seventeen times, and by this point,
the stimulation of not only the noise but the very
normal I think maternal. Am I doing this wrong? Am
I fucking up my kid? Because I will or will
not be playing Baby Shark. She's got plumb in her hair,
(31:13):
she's a wreck. I'm dreading bathtime because she hates getting
her hair washed. So there's seventeen different thoughts whirling in
my head. And because I don't know that I'm autistic,
that I get over stimulated extremely easily, and that the
parent that I am now would go into the other
room or tap out or put on noise canceling earphones.
(31:33):
I did not know this then at thirty, and I
completely lose it. She screaming about baby Shark. I grab
the plate that she's eating the plum off of, and
I throw it against the wall and it breaks. And I'm,
of course horrified by what I've done, and I run
into the other room and I tell Elliot, I need
you to take over, and he does. But that kind
(31:56):
of incident of ramping up the overstimulation happened multiple times,
and I would end up throwing things, just like I
did when I was in high school. Right, I didn't
know what was going on. The rage didn't end until
the mystery did, and because I didn't know what was happening,
I would force myself to endure it. All Moms, deal
(32:17):
with this. What is wrong with you that you can't
handle listening to baby Shark that you get so worked
up because your baby is screaming.
Speaker 1 (32:26):
During this time, Marian was seeing therapists. This was nothing new.
By her early thirties, she had been diagnosed or improperly
diagnosed with anxiety depression, high sensitivity, probably Charett's. She'd been
prescribed a bunch of SSRIs and none of this was working.
None of it made sense.
Speaker 2 (32:48):
Every time I'd go to see a therapist or a psychiatrist,
or do a group coaching, or do a yoga teacher training,
or my gratitude journaling or whatever it was, none of
it felt like it answered question of why I was
the way that I was. And the pills did not help.
They dampened it a little bit, But I never felt
(33:08):
that same relief that people talk about when they take antidepressants.
I never felt, oh my god, this weight has been lifted.
It made me ten percent more capable. And I just
kept going round and round in circles with different doctors
trying to get some sort of answer, and they never
could give me one. And why do you.
Speaker 1 (33:25):
Think that is? Because you were, in fact, and had
been for a very long time, presenting with a whole
series of behaviors and symptoms that would point to an
autism diagnosis, even though you were extremely high functioning. What
(33:48):
do you attribute that to?
Speaker 2 (33:50):
I wish I had an answer to this, Danny, because
I feel like I'm going through it again now as
an adult with other shit, sleep apnea, insulin resist, whatever
the thing is. It feels like anytime I go to
a doctor, there is oh, this person thinks it's this thing,
and know, this doctor thinks it's this thing, and no,
you have to try this. It's just it's endless. So
(34:12):
I don't have a good answer.
Speaker 1 (34:13):
Well, I guess it was a bit of a leading question.
How much of this is gender bias. There's a statistic
that eighty percent of autistic girls remain undiagnosed by age eighteen.
That would certainly not be true of autistic boys. And
then you have the hysteria piece of it. Women presenting
with these symptoms. In another century it would have been
(34:36):
called like neurasthenia. You know, it's just overly tensative.
Speaker 2 (34:40):
Yeah, we don't love women just in general. But I
feel like, especially doctors don't love women. I know that's
a terrible thing to say, and I've luckily had some
lovely doctors, but I've also had some terrible doctors. And yeah,
eighty percent, eighty percent of women remain undiagnosed by the
time they're eighteen. Autistic women, which means the vast majority
(35:02):
of us are getting diagnosed the way that I did
in our thirties, forties, sixties. I get emails every day
from women of all decades, but all adults who didn't
find out they were autistic until much later. All of
our media representation about autism is focused on boys. Right.
It's only in the past couple of years that we've
(35:22):
started featuring autistic women and girls in movies and TV.
But for the most part, we thought it was a
boys disorder. It's completely bonkers to me. And it's not
just autism, right, It's not even just developmental disorders. Right.
Women are diagnosed later than men in over seven hundred
different conditions. Right. Our leading cause of death for women
(35:45):
is cardiovascular disease. And yet all of the quote unquote
symptoms of heart attacks that we see in the media
are the symptoms that men experience. A lot of pharmaceuticals
aren't even tested on women. Our lab rats are primarily made.
So it makes sense to me, given all of the
data about medicine and women, that you're going to tell
(36:08):
me that I'm anxious and you're not actually going to
tell me what I really have. And I have a
number of stories in the book of women with cancer
and blood clots who went to the doctor and were
told that they were just stressed instead of getting diagnosed.
So it makes sense that when I go to my
therapist after having a baby and I say I'm throwing
plates against the wall, what's wrong with me? She says,
(36:30):
welcome to motherhood. Being a parent is really hard. She
does not say the word autism to me.
Speaker 1 (36:38):
When June is four and Marian is around thirty, she
goes with a friend to see one of her favorite comedians,
Hannah Gatsby, who themselves had been diagnosed with autism as
an adult and had made this a part of their act.
Speaker 2 (36:53):
So Hannah Gatsby, who is just a gift to all
of us, was performing in San Francisco, and I go
to see their show with a friend and someone in
the audience shouts out, I love you, Hannah, and Hannah's
stumbles and you can see that they're visibly upset. And
I've seen comedians it wasn't even heckling. The audience member
(37:15):
was saying something kind, But it was the first time
I'd seen a live performer be jarred by something that
I would have been jarred by if I hear a noise,
it'll stop me and it'll take a minute for me
to get back on track. I can't filter out the
outside world. And Hannah was late diagnosed artistic, and they
(37:36):
say to the audience member, Hannah goes, can you please
just not do that? It really makes me lose my place.
I can't have anyone talking to me, just basically be quiet.
It just filled me with recognition. I felt like I
was seeing myself reflected in Hannah. I was really impressed
that they set a boundary in front of thousands of people.
I thought that was really cool that they could just
(37:58):
ask for what they needed and get it. Nobody was upset,
nobody noticed it. It didn't change anyone's perspective of the show.
And so I went home and I did not google
am I autistic. It would take another year for me
for those pieces to click into place. But it was
the first time I really felt myself, the whole of myself,
(38:23):
reflected in someone else. I felt, oh, Hannah's experience of
the world is also my experience of the world, and
it made me feel less weird. It did make me
feel less broken. And they did during their set talk
a lot about their autism diagnosis and what it felt like,
and they described it as being the only sober person
(38:43):
in a room full of drunk people, which I loved
and find very relatable. And so that was that Hannah
Show was the first puzzle piece clicking into place over
the next year before my autism diagnosis.
Speaker 1 (38:57):
And it takes you a bit to get to that diagnosis.
After the Hannah Show, you at some point bring up
to the therapist you're then seeing, I wonder what do
you think about autism, and that therapist is quite dismissive
and pretty much says to you, because you're married and
you have a child, and you're charming, you can't be autistic.
(39:21):
And one of the things that you write that I
particularly highlighted that I love is I learned that autistic
girls are more likely to wear masks because all girls
are forced to wear them from the moment we open
our eyes. The only difference is what the mask is hiding.
So there's something that is so it's incredibly relatable, but
(39:43):
it also is what confused your therapist, who sounded like
a highly trained therapist who just was missing the boat
on this and had all sorts of other diagnoses for you.
But dismissed this, And something happened there which I would
love you to talk a little bit about, which was that,
for the first time, something tells you your own voice
(40:09):
overrides what she's saying, something tells you that she's wrong.
Speaker 2 (40:14):
Yeah, it really is. And I think every woman, non
binary person can probably relate to this, which is, I
feel so overwhelmed in front of experts. I often just
feel like, Oh, they know better than me, especially doctors,
people with a lot of education. Who am I to
question this? She's right, I'm wrong. I felt so stupid
(40:37):
in that appointment. Oh you're charming. Autistic people have a
hard time living a normal life. That's what she said.
Of course, it didn't occur to me until later, and
this is what made me think, wait a minute, like,
I don't think she knows what she's talking about in
this particular area. That made me realize for the first
time that this one expert was not the beal and
(40:58):
all of my own body. And by this point I'm
thirty four. I had been dismissed so many times by doctors.
I felt powerful, Oh, I can talk to someone else.
I don't think this person has the answer. I need
to find someone who knows more about this, and then
it takes you a bit, but you do yes. I
called pretty much every developmental kind of clinic autism clinic
(41:25):
in Portland, and some of them hung up on me.
I had a couple people be just really surprised that
I was calling for myself and not my child. The
autism kind of diagnostic community is very much focused on children.
The assumption is that if you've made it to adulthood,
you're fine, that you don't need to know. There's no
(41:45):
reason to know. If you're not a student who needs accommodations,
or in an office and need accommodations, then why would
you need this information. So it was very hard for
me to find someone, but I did a lot of digging, honestly,
primarily on social media, just looking at other autistic women
who've been diagnosed late in life and trying to find
(42:05):
out who diagnosed them. And there are a number of
people that are specialists in autism who do adult assessments.
They are few and far between, but they do exist,
and so I lucked into finding doctor Marsh. She is
local to me, which is wild, and she spent thirty
years diagnosing children in California and Oregon as part of
(42:28):
the school system, So she did a lot of children's assessments.
And as she got older and learned more about the
people that were getting missed, primarily women and other marginalized genders.
Black and brown people also get missed, she realized that
she needed to be able to assess masked presentation. So
(42:49):
the autism that we hide. Doctor marsh was like, okay,
but what about the girls who are biting the inside
of their cheeks or flaring their nostrils and only talking
about the Spice Girls or Puerto Rico? What about them? Right?
Because those they are not represented in the media. We
don't talk about them, and we miss them. And so
I found her and she was amazing, and she had
(43:13):
a ton of tests, actually, and I think she did
about five of them. I think two or three were
the official AQ tests that a lot of doctors use.
And then because she's been doing this for thirty years,
she had developed her own tests and the ways that
she sees autism be hidden by some people after many
(43:34):
years of trying to hide, and so she has her
own tests. And we did two over zoom where she
would observe me and then ask me questions, and then
by the third session we had the big reveal. But
by that point, after talking to her for so long
and reading so many memoirs of other autistic women, I
knew already, and so her saying you're autistic. I wouldn't
(43:57):
say it was anticlimactic, but at that point there was
no doubt in my mind.
Speaker 1 (44:01):
It was a confirmation.
Speaker 2 (44:03):
Yeah, exactly. There's also a moment.
Speaker 1 (44:06):
With doctor Marsh, whare the two of you talk about
whether to bring in your parents and you mull that
because there's a part of you other things, well, maybe
they would remember better than I would my early childhood,
and doctor Marsh says, I trust you. The way you
see yourself matters, and that was a revolutionary thing for you.
Speaker 2 (44:29):
Yeah, Like, when are we ever told, especially by medical professionals,
I trust you and your interpretation of yourself. I trust
that your breathing issues, that your chest pain, that your anxiety,
that your sensory overwhelmed is real. When are we ever
told that? Truly, it was one of the most emotional
(44:51):
moments of my life to be told I don't need
to ask anybody else, I don't need to talk to
my parents, I don't need to bring in my f
fourth grade teacher, my experience of the world is valid,
and doctor marsh took that seriously.
Speaker 1 (45:10):
Marianne's older brother is getting married, and a family wedding
is the definition of a lot. But by now Marianne
has shared her diagnosis with her mother, and her mother
surprises her with an extraordinarily empathic response. Her mother apologizes
for not having seen or understood the signs in Marianne's childhood.
(45:30):
That goes further and asks what can I do now?
What do you need? This makes it infinitely more possible
for marian to be herself now she has language tactics,
a safety net, a map.
Speaker 2 (45:46):
I was shocked. My mother and I butt heads a lot.
We're very similar in a lot of ways and very
different in a lot of ways, and they don't often
line up, so most of our conversations are argumentative in
some way. It's really unpleasant, And it was really the
first time I felt like I didn't have to defend
myself or that she was really curious about my experience
(46:09):
without trying to fix me, but instead here where I
was coming from, and see me for who I was
and not who she wants me to be, and It
really was a complete shift in our relationship, and my
parents just moved across the country to be near me.
If you had asked me ten years ago whether I
wanted to live twenty minutes for my parents, I would
(46:31):
have laughed in your face. This is a shock to
me that I was okay with this, and it really
is a testament to the ways that my mom has
been able to learn who I am as an adult.
And really she has been so accommodating to me. She
doesn't tease me anymore for needing to be inside a
lot quiet, reading a book, needing an app She will
(46:54):
ask if I need to leave a loud place. Right.
She escorted me out of this pizza restaurant. There was
seventeen of us at the table and I'm having a meltdown,
And instead of telling me, oh, get your head out
of your hands, you're being rude, instead she asked, can
I take you home. I know a lot of autistic
(47:15):
women who have not had this shift with their mothers,
and I feel very lucky that I did. And a
big part of it is just her willingness to listen
and learn. She's read all the autism books now, it's amazing.
Speaker 1 (47:28):
The label Marianne finally received liberated her in countless ways
connected her more deeply to her family and herself. But
labels can also be constricting, confusing, even reductive or restrictive.
Shortly after doctor Marsh gave Marianne her diagnosis, she wrote
about her experience on a popular online site. Then she
(47:50):
did what many writers avoid. She read the comments.
Speaker 2 (47:55):
We were not designed for this much information about our work.
Speaker 1 (47:59):
No talk about over stimulating.
Speaker 2 (48:01):
Yeah, and a lot of the comments, the vast majority,
Like all comments, the vast majority were positive and lovely,
and so many different stories of women who'd been late
diagnosed with autism, adhd ocd endomitriosis, postpartum psychosis. Really, so
many incredible stories from women in the comments. And the
(48:21):
ten to twenty people who decided that they hated me.
It was both awful and I also really empathize with them.
I think the vast majority of them are parenting autistic
children who look or act so much more quote unquote
severe than me. And that's a whole other topic for
another day. But I get that it's probably really hard
(48:41):
if you're wrestling with this idea that you will be
taking care of your child for the rest of your life,
or maybe your child will never get married or have
children or have a job. I understand that to look
at someone like me who's married and has a child
and is charming and owns a house, right, that those
things feel fucking irritating and not fair. And so I
(49:05):
think part of the reason it was so hard to
read those comments just because I do get it to
a certain extent. And I think when you write about anything,
especially if you're a memoorist or an essays, you're writing
these really personal stories and it's not I wasn't writing
about their children or their experience. I was writing about mine.
And I think it took me a long time to
realize that. I think the kind of overarching comment that
(49:28):
people made is, well, if she's autistic and Rainman is autistic,
how can those two things be the same. What is
even the point? We shouldn't have to label people, stop
labeling everything. Let's just accept everyone for who they are.
And I guess I understand that, and like I'd love
for all of us to feel free to be you
(49:49):
and me, and in a perfect world we wouldn't need labels.
But I don't know what to tell you or her
that it really sucks to go through your whole life
feeling on the outside of everyone, like I just watched
all my friends get thrown baby showers and hold down
a job for more than six months and have friends
and go out after work, and to just be constantly
(50:11):
hammering myself with this idea that I was broken and
less than I really cannot express what a relief it
was to be given a reason why, and to not
only be given a reason why, but to be given
a community, a built in community of neurodivergent women who
also experienced the world that I did. And essentially those
(50:32):
commenters were trying to take that away from me and
trying to take that away from other autistic people that
for whatever reason, we shouldn't get to have this information
about ourselves. It should be kept secret. At the time,
it was very hurtful.
Speaker 1 (50:45):
It caused you briefly to doubt yourself, like to feel
like you needed to get a second opinion.
Speaker 2 (50:53):
I went through the whole process again. I was like, Oh,
maybe they're right, maybe I'm not autistic, maybe marsh got
it wrong. So I spent another one thousand dollars trying
to get another answer. So I found another specialist outside
of the United States, so I could get this more
like unbiased perspective. I didn't tell her about my first diagnosis.
(51:13):
I did all the tests, I did a huge survey,
long interview with her, and it was the same thing. Yes, absolutely,
you're autistic. It was definitely validating to do it again
and to feel like I had this armor. It's helpful
to have two diagnoses, but it was unnecessary. I knew
what I knew about myself, and it's one of the
reasons I don't really use the internet anymore because it's minefield.
Speaker 1 (51:40):
It has now been four years since her diagnosis, and
in that time life has vastly improved from Marian, as
she puts it, it's like night and day.
Speaker 2 (51:50):
So June is eight and she's about to finish second grade,
which is so sad. She's so big. She talks about
my autism all the time. She tells everyone she'll be
at school and I have the unit on neurodivergence, because
of course they do. We live in Portland, Oregon, and
they all have their little fidget spinners and June as well.
My mommy's autistic, and she knows all about it, and
she talks about her own needs and her own accommodations
(52:13):
that she wants, and it's amazing. And I work from home,
I write, I don't have to talk to anyone, and
it's great. I have a door that closes. There's no
like frat party beers after work. I really don't think
about being autistic anymore. It doesn't cross my mind that often.
I honestly rarely even talk about it anymore, because my
(52:37):
whole life has been built inside these fences. I think
that keeps me from rarely being overstimulated. I have the
support system that I need to take care of me.
I can be a better partner and a better mom
and a better writer. Now that I have this information,
(52:57):
it's just been so freeing to talk about it without
being twisted up in knots about it. It also helps
that the world knows more about autism now that it's
actually not that strange. And I meet women at least
once a week someone tells me that they're autistic, and
it does feel very much. Especially in Portland, Oregon, part
of our language, the way that we talk about neurodivergence,
(53:17):
feels way different, and I think that's just impacted the
ease of my life a lot.
Speaker 1 (53:27):
Here's Marianne reading one last passage from her beautiful, important memoir.
Speaker 2 (53:35):
At thirty four, I discovered that no power grows while
cowering in the dark. Learning and sharing the word autism
would heal decades of wounds, dozens of relationships, a lifetime
of self hatred. Six letters gave language to the terrain
of my life. I could read the original transcript of
myself now a palimpsest of every person I'd ever tried
(53:58):
to be. The Centers for Disease Control and Prevention estimates
that about one in thirty six people is autistic. That said,
we know autism goes undiagnosed and marginalized genders and people
of color, so we can assume this number to be
significantly higher. Women like me are being diagnosed every day.
(54:18):
We are everywhere, hiding in plain sight, wearing the masks
we were given as children. My heart aches for them
and for her, the marian who begged to be changed
at nine and nineteen, who ran into classroom closets and
office bathrooms. Some day I would tell her, you will
have a name for what you are, and you will
(54:40):
never again have to keep it hidden.
Speaker 1 (54:49):
Family secrets is a production of iHeartRadio. Molly's Accur is
the story editor and Dylan Fagin is the executive producer.
If you have a family secret you'd like to share,
please leave us a voicemail and your story could appear
on an upcoming episode. Our number is one eight eight
eight Secret zero. That's the number zero. You can also
(55:10):
find me on Instagram at Danny Ryder. And if you'd
like to know more about the story that inspired this podcast,
check out my memoir Inheritance. For more podcasts from iHeartRadio,
(55:38):
visit the iHeartRadio app, Apple Podcasts, or wherever you listen
to your favorite shows.
Family Secrets is a production of iHeartRadio.
Speaker 2 (00:06):
I see that girl with her cow licks and her
sleepy eyes, trying so hard to be the peppy, energetic,
playful kid everyone wanted her to be, and I imagine
taking her in my arms like some romance hero and saying,
you are not broken. There is a better, more beautiful
word for what you are.
Speaker 1 (00:27):
That's Marianne Chambari, Portland, Oregon based essayist and author of
the recent memoir A Little Less Broken. Marianne's is a
story of a very particular kind of secret, the kind
so hidden that it seems possible that it doesn't exist
at all, and yet shapes the course of an entire life,
(00:49):
until finally it is named. I'm Danny Shapiro, and this
is Family Secrets. The secrets that are kept from us,
the secrets we keep from others, and the secrets we
(01:12):
keep from ourselves. Tell me about the landscape of your
childhood in Old Greenwich, Connecticut.
Speaker 2 (01:21):
I think when I look back, it honestly feels almost
like I'm watching the movie of my childhood. We had
this house that butted up against the woods, and I
spent a lot of my childhood running through those woods.
Make little soup out of wild onions. And it wasn't
really until I was an adult that I looked back
at a lot of those kind of idyllic memories and
(01:45):
saw them for what they were, which for the most
part was me trying to hide from people and me
feeling like I was not like everybody else. I did
not want to be around my family, as loving and
wonderful as they are. I am the only girl, and
I have three younger brothers, and there's my parents.
Speaker 1 (02:07):
So it was a.
Speaker 2 (02:07):
Big, very bustling house right near downtown Old Greenwage, and
I describe it as the Weasley House from Harry Potter.
It was like tilting to one side as my parents
built up. Our house was a shack compared to the
rest of the houses in Greenwich. I was very serious
compared to my siblings who were always yelling and having
(02:28):
nerf fights and playing video games, and I was quiet
and reading all the time and wanting to escape into
the woods. And so most of my childhood actually feels
like there's two sides of it. There's the movie that
I'm watching, the very pleasant ville idyllic suburban American childhood,
(02:49):
and then there was the interior of what was happening
within me, which was that I hated myself most of
the time and I felt separate from the rest of
my family. My dad was a journalist. We moved to
Connecticut when I was five or six. He got a
job at the New York Times, so it was his
absolute dream job. I think he was the editor of
the Connecticut section for a while before it no longer existed.
(03:13):
He wrote a column called family Man, where he wrote
about being a dad and about me and my siblings.
And I found a note. So my dad is a
bit of a paper hoarder. And they recently sold the
house in Connecticut to move out to Oregon, and my
dad gave me boxes of old papers that he's kept
over the years, and I was going through them literally
(03:35):
just two days ago, and I found this little scrap
of paper where he had been transcribing the conversations that
I was having with my friends at my third grade
birthday party. And he saved that transcription, so it says
I have a crush on Cory. Don't tell anyone. I
would be so embarrassed if anyone knew. And I very
(03:57):
vividly remember a week after that birthday, his family man
column was about my third grade slumber party and all
the boys we had a crush on, And all my
friends came to school the next day and were livid
with me and livid at my dad because their parents
had told them. Oh, Marian's dad wrote an article in
(04:17):
such and such a newspaper about all the crushes you have.
And I already did not have very many friends. But
that was really that killed any chance I had of
having any sort of like real intimate relationships with girls
in elementary school especially. So yes, my dad was a
journalist but it came with some very serious downsides for
a while.
Speaker 1 (04:37):
So he named names.
Speaker 2 (04:38):
Yeah, he named names. You didn't even change them, like
he wasn't he was not thinking. So old greenwage is.
I describe it as the love child between Norman Rockwell
and a boat shoe. All of my friends had sail boats,
and they belonged to a beach club. But it's the
type of wealthy that you wouldn't necessarily know it by
(04:59):
looking at someone. And everyone always wore the same clothes,
right they're wearing their Nantucket reds. When I was in
middle school, I think everyone started wearing ug boots and
I was devastated to not have a pair of ug boots. So,
by its very nature was very exclusive. You were on
the outside if you didn't have the right clothing or
(05:20):
live in the right house. Even from an extremely young age,
it would be very obvious who was one of us
and who wasn't, and I obviously was not. My parents
did not care about ugs. We shopped at DSW and
my mom is very thrifty and very environmentally conscious before
it was cool, and so she was always hand washing
(05:42):
our ziploc bags and hanging them to dry around the house.
There was always food that had gone off in the fridge,
for sure. So I was already different in my family
simply by the nature of my gender, right, I was
the girl, and then I had these younger boys. I
was different because my parents were journalists and not hedge
(06:03):
fund manaitures, and so in Greenwich, if you're not in finance,
you're poor, right, which is obviously not true. We were
like very comfortably middle class, but like it felt that
way growing up. I already had two strikes against me.
So on top of that, my mom is also Puerto Rican,
so then there's this racial element as well. I loved
(06:25):
talking about Puerto Rico. Growing up, I learned Spanish and
English at the same time. I would wear my abuillos guayabra,
which is this like very typical kind of Puerto Rican
and Cuban white button down shirt, and I would wear
it to school. I would bring mpanadas to school, So
then there's the kind of racial difference. And then on
top of all of that, I was quote unquote weird.
(06:49):
I talk a lot. I have no filter, and so
I would often just say the thing that I was
feeling in any given moment. There was this kid. He
was very rich, and everyone called him rich bitch behind
his back. That was his nickname, which is so silly
because it's Greenwich, Connecticut and everybody was rich, but he
(07:10):
was richer than all the other rich kids, and I
did not realize that I couldn't just call him rich
bitch to his face, and so I did, which is
when the vice principal took me to her office and
said that I was the worst kid in fourth grade.
And it's so bonkers to me now because I did
not feel bad. I got good grades, I was smart,
(07:33):
I showed up on time. I was not the one
inventing the nickname rich Bitch. I was not the one
throwing kickballs at people's heads at recess. I was not
one of the bitchy popular girls who was constantly mean
behind other kids' backs. I wasn't passing shitty notes. But
because I didn't have a filter and I couldn't pretend
(07:55):
to be someone I wasn't in the way that a
lot of the kids could, it was immediately obvious to
people that I was different, and different was bad. I
didn't remember this until recently, but I didn't have a
lot of control over my body in the same way
that other kids did. So a very easy example is
said I was terrible at sports, right, not a huge deal.
(08:17):
Lots of people are terrible at sports. I would be
the one in the far far outfield picking dantellions or whatever.
But I also had constant pea accidents all the way
until I was in middle school. Actually, I remember in
first or second grade meeting my next door neighbors for
the first time, and they were so funny. Oh my god,
(08:38):
I was obsessed with them right away, and they were
talking and joking to me, and I was just laughing
so hard and completely not conscious of the fact that
I needed to pee, and I just completely wet myself
in front of these like very cool, funny kids. I
was probably in second grade, so let's say I was
eight years old, but that would continue, right. It happened
(08:59):
in class. It happened probably in third or fourth grade
at a friend's house. Same thing. It felt like my
body and my brain were constantly divided, and I wasn't
often aware of what was happening to my body until
it was too late, And most of the time it
involved peeing on the floor of my friend's houses up
(09:21):
until I was thirteen. So the most recent memory I
was thirteen or fourteen. I was trick or treating, you know,
it's that year when everyone tells you you're too old
to trick or treat, but you go anyway. And we
were like knocking on someone's door, and as soon as
she opened, it occurred to me, Oh my god, I
have to pee so bad, And I was like, can
I use your bathroom? And I sprinted past her into
her bathroom, peed all over her bathroom floor, and then
(09:44):
just left it there. God, it's so embarrassing in eindsight,
but really I didn't even remember that these things had happened.
Until the past couple of years. Really well, that.
Speaker 1 (09:53):
Makes so much sense because it seems to me correct
me if I'm wrong, But there's this kind of like
disc connect between interior and exterior, between body and brain,
between brain and environment that like the way that you
describe it, and this profound sort of excess of stimulation.
(10:19):
I mean, one of the things that struck me that
you wrote about is there's some really wonderful sprinkling through
of theory In your book and The Invisible World's theory
of autism, the researchers Kamela and Henry Markram suggest that
autism isn't just a differently wired brain, but a brain
with more wiring in other words, supercharged. And so it
(10:43):
feels like with that supercharged brain, I can imagine that
it would disconnect from just the oh I need to
pee in advance.
Speaker 2 (10:52):
I had really never thought about it that way. That
is an extremely articulate explanation of what I think is happening. Yeah,
I think I think that's exactly it. The example I
always use is just when I'm working from home, right,
I'm in my office, I'm trying to write and a
car slashes by outside and my next door neighbor is
hammering at his roof again for the millionth time, and
there's a dog barking across the street, and my husband's
(11:14):
chair is squeaking upstairs, and my cat is trying to
get into the office, and all of those things are
competing for an equal amount of attention, and it's very
hard to just focus on one of those things, and
so what ends up happening is other stuff gets completely forgotten. So,
for example, my hands and feet will get really numb
because I haven't moved them, or I'll have to go
(11:37):
to the bathroom and then not realize until it's an emergency.
And so I can imagine on Halloween when you're thirteen,
you're laughing with your friends and you're full of candy
and you've got a sugar rush and it's freezing cold outside.
The having to pee is just it's being drowned out
by the fifty other things that are competing for your attention.
(11:59):
In today's world, this cluster of behaviors would likely be
recognized earlier, a diagnosis made along with accommodations. Perhaps now
a young Marian could grow up truly knowing herself, accepting herself.
But this is not remotely what happened for Marian. All
the unknowns were manifesting in her body, her environment, all
(12:21):
of which were deeply misunderstood by those around her. And
she misunderstood herself too, of course she did. She had
no map. It's terrible for people to misunderstand you. It's
terrible to be told that you're the worst kid in
fourth grade when you really just thought you were just
repeating what everyone else was doing. You don't see how
(12:43):
it's different, right, But the misunderstanding yourself, I really did.
I just felt like I was insane constantly for decades.
I did not know that the constant pe accidents, the
blunt honesty, the knee to retreat to small, dark, quiet places,
the stimming, that these things were part of a collection
(13:07):
of conditions that's called autism. And so the stimming is
a great example. So for a really long time, I
thought that I had ticks or later turets. That was
one of my many diagnoses in my twenties was that
I had tourets because I was very often twitching my face.
I would blink really hard and then flare my nostrils,
(13:29):
and I remember the first time someone called me out
on it was a guy that I had a crush
on in sixth grade, and he said, why do you
move your face all weird like that? You look like
a rabbit. And so there was this very visible indicator
from very early on that I was different, that there's
something wrong with me. And again I just internalized that.
Over the years, I just internalized all the ways that
(13:51):
I was different, and because I didn't know I was autistic,
I just thought there was something wrong with me. I
was broken. I'm weird, I'm twitchy, I'm gross, I'm moody,
like name fun adjective. And I had hurled that at
myself constantly.
Speaker 1 (14:09):
Marianne writes, at thirteen, all I knew was what I
had been told. And there are only so many times
you can tell a girl she's broken before she starts
to believe it. This has such a universal ring of truth,
doesn't it, Because as children, as teenagers, we tend to
define ourselves by who we're told we are. Marianne's been
(14:32):
told she's weird and bad, that she's just too much,
and now she's a teenager, and some of this starts
manifesting itself as anger. It's a perfect storm. She smashes things,
breaks things, and also is being broken diagnoses all of
them wrong are hurled at her too, anger, management problems,
(14:54):
emotional dysregulation. For now, her bones know, she doesn't have
the language.
Speaker 2 (15:02):
It's like growing up thinking that you're one race and
then you're not, or thinking that your parents are your
biological parents, and then you find out you're adopted. It's
like this core piece of information, even if no one
was quote unquote keeping it from you, it's still there,
you still know it. I think a lot about Sylvia Plath. Actually,
a writing teacher of mine was explaining that many people
(15:25):
in Sylvia's family had killed themselves, but nobody told her,
and so she's feeling the feelings, the depression and the
suicidal ideation, all of that, but not knowing why. And
obviously this was ages ago, and I cannot diagnose anyone
through history. But I just feel like hidden knowledge exists
(15:45):
in our bodies, and if we're given access to it,
if we know why we are the way we are, like,
could it save us? Could it have saved Sylvia to
know that it wasn't just her, that this ran in
her family, that this thing that she's feeling is genetic.
It has nothing to do with her or something that
she's quote unquote doing or not doing wrong. And I
(16:07):
think more information is only a good thing.
Speaker 1 (16:12):
We'll be back in a moment with more family secrets.
Marian goes to college in North Carolina at Davidson and
(16:33):
it's the first extended time she's been away from her family.
She travels to the UK for a semester abroad, which,
when she falls in love with a man named Lewis,
turns into a much longer period of time overseas once
she graduates and moves in with him, first to London,
then to New Zealand, where his family lives.
Speaker 2 (16:53):
So, yeah, I moved in. I'm twenty five years old.
I have moved across the world with my boyfriend. We
had this beautiful romantic love story in London, straight out
of some rom com with Hugh Grant. He even looked
a little bit like Hugh Grant. And everything was great
when we're living in London and we're both in this
city that we love and living in separate apartments. But
(17:16):
once we were in New Zealand, I'm confronted with so
many differences. I don't have a job, I'm living with
his parents, who are the loveliest human beings, but are
still someone else's parents and you're in their home. I'm
in a country that I'm completely unfamiliar with, and the
houses infested with cockroaches, which are my biggest, absolute, biggest fear.
(17:39):
I became a completely different person from the woman that
he met in London. I went from fun, loving and
adventurous and this performance of a sexy American to suddenly
being afraid all the time. Constantly, I was afraid of
his parents. I would hide in his room so that
I wouldn't have to talk to them. I would stay hungry
(18:02):
and pretend that I didn't want dinner because I just
couldn't keep up that performance of the fun American girlfriend.
And the cockroach is the constant. If you've ever had
a phobia, it's so silly saying it out loud, because
it's just a bug. But I cannot express the sense
of fear that I lived in every second of every
(18:24):
day in that house, like I could not move, I
couldn't get out of bed or go to the bathroom
without scouring every single corner and every wall for a cockroach.
And a lot of the time because there were a
lot of cockroaches, there would be one, and it felt
like being electrocuted, and so that took everything out of me.
(18:47):
And it wasn't until years later that I discovered this
idea of spoon theory, which was created by a woman
with lupus I believe, who was explaining to her friend.
They're having dinner and the friend is trying to understand
what it's like to live with lupus, and so Christine
I think is her name, hands a bunch of spoons
to her friend and says, Okay, these are your spoons
(19:08):
for the day. Everything you do takes a spoon. You
want to get up and wash your hair and put
on makeup and get dressed, that's going to be a spoon.
You need to commute to work, Oh, but that would
usually be a spoon, But there's an accident and there's
a lot of traffic and it takes an hour and
a half. That's actually going to cost you three spoons.
By the time you get to work, you're halfway through
your spoons already. And by the end of the day,
(19:30):
if you're out of spoons, you cannot feed yourself, you
can't go to the gym, you can't go out with friends,
you collapse into bed without brushing your teeth. That's how
I lived, that's how I continue to live. And so
living in New Zealand with parents who were not my own,
who wanted to talk to me all the time, and
I had to perform and be a good house guest,
(19:51):
essentially in my own home for six months, followed by
living with a phobia, it meant that I was completely incapacitated.
I didn't work, I barely got out of bed, and
me and the boyfriend lasted six months after I moved
to New Zealand because I am with a person now
who deals with that all the time. But you know,
at twenty five, when you're just learning how to be
into relationships, that was not something that he was capable
(20:13):
of handling. And because I didn't understand it, I didn't
understand that my spoons were being blown by lunchtime, there
was no way to fix it. And this is what
I'm talking about, how knowledge of yourself is so much power.
Is I live a very different style of life now
that allows me to have enough spoons for the whole day.
Speaker 1 (20:31):
Marion stays in New Zealand for a couple more years.
She and Lewis are broken up, so she moves into
her own place, not a cockroach in sight. She lasts
as long as she can there, grateful for the grand adventure,
but eventually must move back to the States. She goes
to San Francisco, where she's gotten a job at a
travel tech startup. On paper, it's a fantastic place to land,
(20:55):
a great opportunity. That's not lost on Marian.
Speaker 2 (21:00):
Tech is a hard place if you have sensory issues.
So the first office that I worked at was like
a preschool jungle gym. It was a huge warehouse, completely
open concept. There was an adult swing set hanging from
the rafters and one of those like parachutes that they
(21:20):
use in preschools, like pinned to the ceiling. There were
quote unquote family dinners for breakfast, lunch, and dinner. They
wanted to keep you in the office. And it's so loud,
and everyone was just on a lot of drugs. They
were constantly partying. It was like a frat house, but
a job that you got paid for and lots of
(21:41):
people love that. There is a whole culture of that
in San Francisco. But as someone with extreme social anxiety,
I can be hard to be around and so I'm
watching all my coworkers have fun together while I scowl
at my desk, and it's very loud, So how do
you concentrate? And speaking of spoons, they were just exhausted
(22:03):
after an hour of being in the office. I used
to come home after that job every day and just
sob for hours, and I just didn't understand how people
had careers, really, And so after that job, I got
another tech job and then another tech job, and they
were all exactly the same. The offices were all open
concept and loud, and it was primarily focused on socializing.
(22:27):
And there was this expectation that in order to be
a good employee you had to be social and fun
and I am neither. I'm just not those things. I
am a hard worker and I'm smart, but social and
fun are not my best qualities. And so I would
often get feedback from my bosses that I needed to
smile more, that I needed to be more pleasant, that
(22:49):
I was too harsh. Every job I've ever had, I
have either quit very quickly because of the social demands
and the sensory input, or I've been fired because I'm
quote unquote unpleasant or too blunt. And when you.
Speaker 1 (23:03):
Would be like, quote unquote unpleasant or too blunt. That's
how you were being perceived. But was that how you
perceived yourself or was there a disconnect between the way
that you felt you were being and the way that
other people saw you being.
Speaker 2 (23:18):
That is such a good question. I really thought I
was being a good employee, that I was being smart.
I would give my all to these jobs, and I
cared about them. I absolutely drunk the kool aid at
every tech company that this is going to be the
next Facebook. Right, They all talked like such a big game.
But one example of this is I was working at
(23:39):
this travel startup and I had been invited by my
boss to go to the CEO's house, his fancy Soma
apartment in downtown San Francisco and have like a brainstorming day.
And it would be eight hours with the head of marketing,
the head of engineering, and the head of product and
the CEO and me. I was making barely any money.
(23:59):
I was a marketing assistant, and I felt, oh my god,
I finally made it. They see how valuable I am.
I'm so capable, this is the beginning of a great career.
And I was so happy to go and so I
really contributed. I don't know what their expectations of me were.
That's part of the problem is I assumed that I
(24:20):
was being invited as an equal, but maybe their assumption
was that I was coming to take notes. I really
don't know. And so I show up and I'm at
this guy's kitchen table and we're all brainstorming. And part
of my job was monitoring our community. I managed our
social media accounts that I'd go into deep into Reddit
and Facebook threads and collect information on how people felt
(24:41):
about our app, and I presented that information. Oh, everyone
hates the fact that there's not a calendar feature. Why
are we focusing all of our time and attention on
this random product that nobody wants when we should be
doing the calendar feature. And I think there's just something
about my tone that makes people feel like I'm talking
down to them or criticizing them. My tone of vois
(25:04):
during an interview is obviously very different from how it
is in a meeting. Some people are surprised when I
say that I'm unpleasant, but I think it's just my
tone comes across as rude or harsh, And part of
that might be because I'm a woman. Right, and that
was I think this was the same year that lean
In came out, and so I interpreted this year too
harsh as a sexism problem and not necessarily that I
(25:25):
was neurodivergent, if that makes sense. I think it's probably
a bit of both. But yeah, So I had this meeting,
I gave this feedback. I butted into the conversations. I'm
interrupting because I know best, right, I'm the one that's
been moderoring the community. I know the things. And the
next day I get an email from my boss, very short,
very kurt, saying you were incredibly inappropriate during the meeting yesterday.
(25:47):
You owe everyone in an apology, and I was completely shocked.
I'd thought I'd done an amazing job. It always came
as a shock to me when I was told that
I was being difficult.
Speaker 1 (26:01):
In twenty thirteen, Marian meets a man named Eliot on
the dating site Okay Cupid. It is in fact his
first ever online date, and in a life that has
had its share of privilege but also a fair amount
of difficulty, this is an extraordinary blessing. Eliot is her
soulmate and just simply gets Marian right off the bat.
(26:24):
He doesn't have the language, and neither does she, but
somehow he knows what she needs and offers it to
her with a beautiful, simple generosity of spirit and love.
For example, one day, Elliot comes home to discover that
Marian has had a particularly hard time. He asks if
she's okay, and she says, no, I'm feeling a little
(26:45):
bit autistic. The word just pops out. She just says it,
almost as a joke. And then Elliot asks, do you
want me to lie on you? And she answers yes please.
His weight on her is like a prescription, and for
what her nervous system already knows, a classic example of
a secret she was keeping from herself, something her body
(27:07):
knew but her brain couldn't.
Speaker 2 (27:11):
It was so crazy to me because that was ten
years ago. This was well before brook Lennon was selling
one hundred and fifty dollars weighted blankets. This was before
autism and women was like very much part of our conversation.
I didn't even know that much about autism. I don't
know why I said that, but it just came out
(27:32):
of me. I'd had some experience with autistic people. I
did a lot of babysitting when I was younger and
some of the kids were autistic. I'd watched rain Man
with everybody else, so like I understood pieces of it,
but I wasn't thinking about it in that way, and
it would be ten years before i'd get actually officially
diagnosed as autistic. But something in me knew that I
(27:53):
needed the pressure of his body. I think it's called
proprioceptive feedback. That lots of autistic people like to be squeezed.
Temple Granted invented a hug machine fifty years ago because
she wanted that squeezing pressure, and something in my body
knew that I needed it. But more importantly, I knew
(28:14):
that Elliott would give it to me without me feeling
like shit about myself. In New Zealand with Lewis, if
I saw a cockroach and started crying, fifty percent of
my feelings in that movement would be, Oh my god,
he's gonna leave me. I'm so pathetic. What is wrong
with me that I can't handle a bug? He hates me.
I'm making his life a living hell. Whereas I can
(28:37):
be with Elliot and have a meltdown and have my
nervous system just regulated. And all the therapy talk, and
I can say, can you please lay on me? And
no part of me is going to think that he
is going to leave or that he won't love me
because of it. He's always offered himself to me without
any sort of judgment or expectation, and it's my favorite
(29:00):
thing about him. We'll be right back.
Speaker 1 (29:28):
Marian and Elliot have a baby, a daughter named June.
After June is born, Marian experiences a very brief honeymoon
period of early motherhood, a state of absolute ease and tranquility.
But brief is the keyword here. Soon it becomes extremely hard,
(29:48):
because having a baby and then a toddler is nothing
if not a prescription for overstimulation. Marian thought the tech
offices in Silicon Valley were overstimulating, but now now there's this.
Can you tell me about the baby shark incident?
Speaker 2 (30:07):
Oh boy, baby shark is the work of the devil.
I'm convinced. It is a terrible thing that the world
has given to parents. And my daughter was obsessed with it.
So she is, I don't know one and a half
or two, and she was very colicky and she had
a lot of big feelings as two year olds do,
and she's telling me that she wants to listen to
(30:28):
Baby Shark. I'm exhausted. I'm at the end of my rope.
I do not want to listen to baby Shark. I
can't do it. But she's screaming and crying and screaming
and crying, and so that is already over stimulation. And
at this point I have to decide which is worse,
the screaming of a baby or baby shark. And I
decide that baby Shark is not as bad, so I
put on Baby Shark. But she doesn't want to listen
(30:50):
to Baby Shark. Baby Shark is the worst. She starts
screaming and crying and screaming and crying. We go back
and forth like this seventeen times, and by this point,
the stimulation of not only the noise but the very
normal I think maternal. Am I doing this wrong? Am
I fucking up my kid? Because I will or will
not be playing Baby Shark. She's got plumb in her hair,
(31:13):
she's a wreck. I'm dreading bathtime because she hates getting
her hair washed. So there's seventeen different thoughts whirling in
my head. And because I don't know that I'm autistic,
that I get over stimulated extremely easily, and that the
parent that I am now would go into the other
room or tap out or put on noise canceling earphones.
(31:33):
I did not know this then at thirty, and I
completely lose it. She screaming about baby Shark. I grab
the plate that she's eating the plum off of, and
I throw it against the wall and it breaks. And I'm,
of course horrified by what I've done, and I run
into the other room and I tell Elliot, I need
you to take over, and he does. But that kind
(31:56):
of incident of ramping up the overstimulation happened multiple times,
and I would end up throwing things, just like I
did when I was in high school. Right, I didn't
know what was going on. The rage didn't end until
the mystery did, and because I didn't know what was happening,
I would force myself to endure it. All Moms, deal
(32:17):
with this. What is wrong with you that you can't
handle listening to baby Shark that you get so worked
up because your baby is screaming.
Speaker 1 (32:26):
During this time, Marian was seeing therapists. This was nothing new.
By her early thirties, she had been diagnosed or improperly
diagnosed with anxiety depression, high sensitivity, probably Charett's. She'd been
prescribed a bunch of SSRIs and none of this was working.
None of it made sense.
Speaker 2 (32:48):
Every time I'd go to see a therapist or a psychiatrist,
or do a group coaching, or do a yoga teacher training,
or my gratitude journaling or whatever it was, none of
it felt like it answered question of why I was
the way that I was. And the pills did not help.
They dampened it a little bit, But I never felt
(33:08):
that same relief that people talk about when they take antidepressants.
I never felt, oh my god, this weight has been lifted.
It made me ten percent more capable. And I just
kept going round and round in circles with different doctors
trying to get some sort of answer, and they never
could give me one. And why do you.
Speaker 1 (33:25):
Think that is? Because you were, in fact, and had
been for a very long time, presenting with a whole
series of behaviors and symptoms that would point to an
autism diagnosis, even though you were extremely high functioning. What
(33:48):
do you attribute that to?
Speaker 2 (33:50):
I wish I had an answer to this, Danny, because
I feel like I'm going through it again now as
an adult with other shit, sleep apnea, insulin resist, whatever
the thing is. It feels like anytime I go to
a doctor, there is oh, this person thinks it's this thing,
and know, this doctor thinks it's this thing, and no,
you have to try this. It's just it's endless. So
(34:12):
I don't have a good answer.
Speaker 1 (34:13):
Well, I guess it was a bit of a leading question.
How much of this is gender bias. There's a statistic
that eighty percent of autistic girls remain undiagnosed by age eighteen.
That would certainly not be true of autistic boys. And
then you have the hysteria piece of it. Women presenting
with these symptoms. In another century it would have been
(34:36):
called like neurasthenia. You know, it's just overly tensative.
Speaker 2 (34:40):
Yeah, we don't love women just in general. But I
feel like, especially doctors don't love women. I know that's
a terrible thing to say, and I've luckily had some
lovely doctors, but I've also had some terrible doctors. And yeah,
eighty percent, eighty percent of women remain undiagnosed by the
time they're eighteen. Autistic women, which means the vast majority
(35:02):
of us are getting diagnosed the way that I did
in our thirties, forties, sixties. I get emails every day
from women of all decades, but all adults who didn't
find out they were autistic until much later. All of
our media representation about autism is focused on boys. Right.
It's only in the past couple of years that we've
(35:22):
started featuring autistic women and girls in movies and TV.
But for the most part, we thought it was a
boys disorder. It's completely bonkers to me. And it's not
just autism, right, It's not even just developmental disorders. Right.
Women are diagnosed later than men in over seven hundred
different conditions. Right. Our leading cause of death for women
(35:45):
is cardiovascular disease. And yet all of the quote unquote
symptoms of heart attacks that we see in the media
are the symptoms that men experience. A lot of pharmaceuticals
aren't even tested on women. Our lab rats are primarily made.
So it makes sense to me, given all of the
data about medicine and women, that you're going to tell
(36:08):
me that I'm anxious and you're not actually going to
tell me what I really have. And I have a
number of stories in the book of women with cancer
and blood clots who went to the doctor and were
told that they were just stressed instead of getting diagnosed.
So it makes sense that when I go to my
therapist after having a baby and I say I'm throwing
plates against the wall, what's wrong with me? She says,
(36:30):
welcome to motherhood. Being a parent is really hard. She
does not say the word autism to me.
Speaker 1 (36:38):
When June is four and Marian is around thirty, she
goes with a friend to see one of her favorite comedians,
Hannah Gatsby, who themselves had been diagnosed with autism as
an adult and had made this a part of their act.
Speaker 2 (36:53):
So Hannah Gatsby, who is just a gift to all
of us, was performing in San Francisco, and I go
to see their show with a friend and someone in
the audience shouts out, I love you, Hannah, and Hannah's
stumbles and you can see that they're visibly upset. And
I've seen comedians it wasn't even heckling. The audience member
(37:15):
was saying something kind, But it was the first time
I'd seen a live performer be jarred by something that
I would have been jarred by if I hear a noise,
it'll stop me and it'll take a minute for me
to get back on track. I can't filter out the
outside world. And Hannah was late diagnosed artistic, and they
(37:36):
say to the audience member, Hannah goes, can you please
just not do that? It really makes me lose my place.
I can't have anyone talking to me, just basically be quiet.
It just filled me with recognition. I felt like I
was seeing myself reflected in Hannah. I was really impressed
that they set a boundary in front of thousands of people.
I thought that was really cool that they could just
(37:58):
ask for what they needed and get it. Nobody was upset,
nobody noticed it. It didn't change anyone's perspective of the show.
And so I went home and I did not google
am I autistic. It would take another year for me
for those pieces to click into place. But it was
the first time I really felt myself, the whole of myself,
(38:23):
reflected in someone else. I felt, oh, Hannah's experience of
the world is also my experience of the world, and
it made me feel less weird. It did make me
feel less broken. And they did during their set talk
a lot about their autism diagnosis and what it felt like,
and they described it as being the only sober person
(38:43):
in a room full of drunk people, which I loved
and find very relatable. And so that was that Hannah
Show was the first puzzle piece clicking into place over
the next year before my autism diagnosis.
Speaker 1 (38:57):
And it takes you a bit to get to that diagnosis.
After the Hannah Show, you at some point bring up
to the therapist you're then seeing, I wonder what do
you think about autism, and that therapist is quite dismissive
and pretty much says to you, because you're married and
you have a child, and you're charming, you can't be autistic.
(39:21):
And one of the things that you write that I
particularly highlighted that I love is I learned that autistic
girls are more likely to wear masks because all girls
are forced to wear them from the moment we open
our eyes. The only difference is what the mask is hiding.
So there's something that is so it's incredibly relatable, but
(39:43):
it also is what confused your therapist, who sounded like
a highly trained therapist who just was missing the boat
on this and had all sorts of other diagnoses for you.
But dismissed this, And something happened there which I would
love you to talk a little bit about, which was that,
for the first time, something tells you your own voice
(40:09):
overrides what she's saying, something tells you that she's wrong.
Speaker 2 (40:14):
Yeah, it really is. And I think every woman, non
binary person can probably relate to this, which is, I
feel so overwhelmed in front of experts. I often just
feel like, Oh, they know better than me, especially doctors,
people with a lot of education. Who am I to
question this? She's right, I'm wrong. I felt so stupid
(40:37):
in that appointment. Oh you're charming. Autistic people have a
hard time living a normal life. That's what she said.
Of course, it didn't occur to me until later, and
this is what made me think, wait a minute, like,
I don't think she knows what she's talking about in
this particular area. That made me realize for the first
time that this one expert was not the beal and
(40:58):
all of my own body. And by this point I'm
thirty four. I had been dismissed so many times by doctors.
I felt powerful, Oh, I can talk to someone else.
I don't think this person has the answer. I need
to find someone who knows more about this, and then
it takes you a bit, but you do yes. I
called pretty much every developmental kind of clinic autism clinic
(41:25):
in Portland, and some of them hung up on me.
I had a couple people be just really surprised that
I was calling for myself and not my child. The
autism kind of diagnostic community is very much focused on children.
The assumption is that if you've made it to adulthood,
you're fine, that you don't need to know. There's no
(41:45):
reason to know. If you're not a student who needs accommodations,
or in an office and need accommodations, then why would
you need this information. So it was very hard for
me to find someone, but I did a lot of digging, honestly,
primarily on social media, just looking at other autistic women
who've been diagnosed late in life and trying to find
(42:05):
out who diagnosed them. And there are a number of
people that are specialists in autism who do adult assessments.
They are few and far between, but they do exist,
and so I lucked into finding doctor Marsh. She is
local to me, which is wild, and she spent thirty
years diagnosing children in California and Oregon as part of
(42:28):
the school system, So she did a lot of children's assessments.
And as she got older and learned more about the
people that were getting missed, primarily women and other marginalized genders.
Black and brown people also get missed, she realized that
she needed to be able to assess masked presentation. So
(42:49):
the autism that we hide. Doctor marsh was like, okay,
but what about the girls who are biting the inside
of their cheeks or flaring their nostrils and only talking
about the Spice Girls or Puerto Rico? What about them? Right?
Because those they are not represented in the media. We
don't talk about them, and we miss them. And so
I found her and she was amazing, and she had
(43:13):
a ton of tests, actually, and I think she did
about five of them. I think two or three were
the official AQ tests that a lot of doctors use.
And then because she's been doing this for thirty years,
she had developed her own tests and the ways that
she sees autism be hidden by some people after many
(43:34):
years of trying to hide, and so she has her
own tests. And we did two over zoom where she
would observe me and then ask me questions, and then
by the third session we had the big reveal. But
by that point, after talking to her for so long
and reading so many memoirs of other autistic women, I
knew already, and so her saying you're autistic. I wouldn't
(43:57):
say it was anticlimactic, but at that point there was
no doubt in my mind.
Speaker 1 (44:01):
It was a confirmation.
Speaker 2 (44:03):
Yeah, exactly. There's also a moment.
Speaker 1 (44:06):
With doctor Marsh, whare the two of you talk about
whether to bring in your parents and you mull that
because there's a part of you other things, well, maybe
they would remember better than I would my early childhood,
and doctor Marsh says, I trust you. The way you
see yourself matters, and that was a revolutionary thing for you.
Speaker 2 (44:29):
Yeah, Like, when are we ever told, especially by medical professionals,
I trust you and your interpretation of yourself. I trust
that your breathing issues, that your chest pain, that your anxiety,
that your sensory overwhelmed is real. When are we ever
told that? Truly, it was one of the most emotional
(44:51):
moments of my life to be told I don't need
to ask anybody else, I don't need to talk to
my parents, I don't need to bring in my f
fourth grade teacher, my experience of the world is valid,
and doctor marsh took that seriously.
Speaker 1 (45:10):
Marianne's older brother is getting married, and a family wedding
is the definition of a lot. But by now Marianne
has shared her diagnosis with her mother, and her mother
surprises her with an extraordinarily empathic response. Her mother apologizes
for not having seen or understood the signs in Marianne's childhood.
(45:30):
That goes further and asks what can I do now?
What do you need? This makes it infinitely more possible
for marian to be herself now she has language tactics,
a safety net, a map.
Speaker 2 (45:46):
I was shocked. My mother and I butt heads a lot.
We're very similar in a lot of ways and very
different in a lot of ways, and they don't often
line up, so most of our conversations are argumentative in
some way. It's really unpleasant, And it was really the
first time I felt like I didn't have to defend
myself or that she was really curious about my experience
(46:09):
without trying to fix me, but instead here where I
was coming from, and see me for who I was
and not who she wants me to be, and It
really was a complete shift in our relationship, and my
parents just moved across the country to be near me.
If you had asked me ten years ago whether I
wanted to live twenty minutes for my parents, I would
(46:31):
have laughed in your face. This is a shock to
me that I was okay with this, and it really
is a testament to the ways that my mom has
been able to learn who I am as an adult.
And really she has been so accommodating to me. She
doesn't tease me anymore for needing to be inside a
lot quiet, reading a book, needing an app She will
(46:54):
ask if I need to leave a loud place. Right.
She escorted me out of this pizza restaurant. There was
seventeen of us at the table and I'm having a meltdown,
And instead of telling me, oh, get your head out
of your hands, you're being rude, instead she asked, can
I take you home. I know a lot of autistic
(47:15):
women who have not had this shift with their mothers,
and I feel very lucky that I did. And a
big part of it is just her willingness to listen
and learn. She's read all the autism books now, it's amazing.
Speaker 1 (47:28):
The label Marianne finally received liberated her in countless ways
connected her more deeply to her family and herself. But
labels can also be constricting, confusing, even reductive or restrictive.
Shortly after doctor Marsh gave Marianne her diagnosis, she wrote
about her experience on a popular online site. Then she
(47:50):
did what many writers avoid. She read the comments.
Speaker 2 (47:55):
We were not designed for this much information about our work.
Speaker 1 (47:59):
No talk about over stimulating.
Speaker 2 (48:01):
Yeah, and a lot of the comments, the vast majority,
Like all comments, the vast majority were positive and lovely,
and so many different stories of women who'd been late
diagnosed with autism, adhd ocd endomitriosis, postpartum psychosis. Really, so
many incredible stories from women in the comments. And the
(48:21):
ten to twenty people who decided that they hated me.
It was both awful and I also really empathize with them.
I think the vast majority of them are parenting autistic
children who look or act so much more quote unquote
severe than me. And that's a whole other topic for
another day. But I get that it's probably really hard
(48:41):
if you're wrestling with this idea that you will be
taking care of your child for the rest of your life,
or maybe your child will never get married or have
children or have a job. I understand that to look
at someone like me who's married and has a child
and is charming and owns a house, right, that those
things feel fucking irritating and not fair. And so I
(49:05):
think part of the reason it was so hard to
read those comments just because I do get it to
a certain extent. And I think when you write about anything,
especially if you're a memoorist or an essays, you're writing
these really personal stories and it's not I wasn't writing
about their children or their experience. I was writing about mine.
And I think it took me a long time to
realize that. I think the kind of overarching comment that
(49:28):
people made is, well, if she's autistic and Rainman is autistic,
how can those two things be the same. What is
even the point? We shouldn't have to label people, stop
labeling everything. Let's just accept everyone for who they are.
And I guess I understand that, and like I'd love
for all of us to feel free to be you
(49:49):
and me, and in a perfect world we wouldn't need labels.
But I don't know what to tell you or her
that it really sucks to go through your whole life
feeling on the outside of everyone, like I just watched
all my friends get thrown baby showers and hold down
a job for more than six months and have friends
and go out after work, and to just be constantly
(50:11):
hammering myself with this idea that I was broken and
less than I really cannot express what a relief it
was to be given a reason why, and to not
only be given a reason why, but to be given
a community, a built in community of neurodivergent women who
also experienced the world that I did. And essentially those
(50:32):
commenters were trying to take that away from me and
trying to take that away from other autistic people that
for whatever reason, we shouldn't get to have this information
about ourselves. It should be kept secret. At the time,
it was very hurtful.
Speaker 1 (50:45):
It caused you briefly to doubt yourself, like to feel
like you needed to get a second opinion.
Speaker 2 (50:53):
I went through the whole process again. I was like, Oh,
maybe they're right, maybe I'm not autistic, maybe marsh got
it wrong. So I spent another one thousand dollars trying
to get another answer. So I found another specialist outside
of the United States, so I could get this more
like unbiased perspective. I didn't tell her about my first diagnosis.
(51:13):
I did all the tests, I did a huge survey,
long interview with her, and it was the same thing. Yes, absolutely,
you're autistic. It was definitely validating to do it again
and to feel like I had this armor. It's helpful
to have two diagnoses, but it was unnecessary. I knew
what I knew about myself, and it's one of the
reasons I don't really use the internet anymore because it's minefield.
Speaker 1 (51:40):
It has now been four years since her diagnosis, and
in that time life has vastly improved from Marian, as
she puts it, it's like night and day.
Speaker 2 (51:50):
So June is eight and she's about to finish second grade,
which is so sad. She's so big. She talks about
my autism all the time. She tells everyone she'll be
at school and I have the unit on neurodivergence, because
of course they do. We live in Portland, Oregon, and
they all have their little fidget spinners and June as well.
My mommy's autistic, and she knows all about it, and
she talks about her own needs and her own accommodations
(52:13):
that she wants, and it's amazing. And I work from home,
I write, I don't have to talk to anyone, and
it's great. I have a door that closes. There's no
like frat party beers after work. I really don't think
about being autistic anymore. It doesn't cross my mind that often.
I honestly rarely even talk about it anymore, because my
(52:37):
whole life has been built inside these fences. I think
that keeps me from rarely being overstimulated. I have the
support system that I need to take care of me.
I can be a better partner and a better mom
and a better writer. Now that I have this information,
(52:57):
it's just been so freeing to talk about it without
being twisted up in knots about it. It also helps
that the world knows more about autism now that it's
actually not that strange. And I meet women at least
once a week someone tells me that they're autistic, and
it does feel very much. Especially in Portland, Oregon, part
of our language, the way that we talk about neurodivergence,
(53:17):
feels way different, and I think that's just impacted the
ease of my life a lot.
Speaker 1 (53:27):
Here's Marianne reading one last passage from her beautiful, important memoir.
Speaker 2 (53:35):
At thirty four, I discovered that no power grows while
cowering in the dark. Learning and sharing the word autism
would heal decades of wounds, dozens of relationships, a lifetime
of self hatred. Six letters gave language to the terrain
of my life. I could read the original transcript of
myself now a palimpsest of every person I'd ever tried
(53:58):
to be. The Centers for Disease Control and Prevention estimates
that about one in thirty six people is autistic. That said,
we know autism goes undiagnosed and marginalized genders and people
of color, so we can assume this number to be
significantly higher. Women like me are being diagnosed every day.
(54:18):
We are everywhere, hiding in plain sight, wearing the masks
we were given as children. My heart aches for them
and for her, the marian who begged to be changed
at nine and nineteen, who ran into classroom closets and
office bathrooms. Some day I would tell her, you will
have a name for what you are, and you will
(54:40):
never again have to keep it hidden.
Speaker 1 (54:49):
Family secrets is a production of iHeartRadio. Molly's Accur is
the story editor and Dylan Fagin is the executive producer.
If you have a family secret you'd like to share,
please leave us a voicemail and your story could appear
on an upcoming episode. Our number is one eight eight
eight Secret zero. That's the number zero. You can also
(55:10):
find me on Instagram at Danny Ryder. And if you'd
like to know more about the story that inspired this podcast,
check out my memoir Inheritance. For more podcasts from iHeartRadio,
(55:38):
visit the iHeartRadio app, Apple Podcasts, or wherever you listen
to your favorite shows.
Family Secrets News
Host
Dani Shapiro
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