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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.

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, 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 keep from ourselves.

Tell me about the landscape of your childhood in Old Greenwich, Connecticut.

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 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.

So it was a.

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 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, 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.

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 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 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 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.

So he named names.

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 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 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 our iploc 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 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 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.

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 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, 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 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.

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, 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 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 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 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.

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.

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 feels like with that supercharged brain, I can imagine that it would disconnect from just the oh I need to pee in advance.

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 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 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.

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 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 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 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, 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 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.

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 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, emotional dysregulation.

For now, her bones know, she doesn't have the language.

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 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 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 think more information is only a good thing.

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

Marian goes to college in North Carolina at Davidson and 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.

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 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.

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 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 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.

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 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, 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, 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 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.

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, a great opportunity.

That's not lost on Marian.

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 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 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 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.

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 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.

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.

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 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.

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 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 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 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 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.

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.

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.

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 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 knew but her brain couldn't.

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 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 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 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 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 thing about him.

We'll be right back.

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, 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?

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 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 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, 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.

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 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 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.

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.

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 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.

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 do you attribute that to?

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 I don't have a good answer.

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 called like neurasthenia.

You know, it's just overly tensative.

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 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 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 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 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, welcome to motherhood.

Being a parent is really hard.

She does not say the word autism to me.

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.

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 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 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 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, 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 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.

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.

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 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 overrides what she's saying, something tells you that she's wrong.

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 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 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 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 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 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 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 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 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 years of trying to hide, and so she has her own tests.

And we did two over oom 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 say it was anticlimactic, but at that point there was no doubt in my mind.

It was a confirmation.

Yeah, exactly.

There's also a moment.

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.

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 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.

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.

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.

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 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 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 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 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.

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 did what many writers avoid.

She read the comments.

We were not designed for this much information about our work.

No talk about over stimulating.

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 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 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 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 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 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 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 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.

It caused you briefly to doubt yourself, like to feel like you needed to get a second opinion.

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.

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.

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.

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 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 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, 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, feels way different, and I think that's just impacted the ease of my life a lot.

Here's Marianne reading one last passage from her beautiful, important memoir.

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 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.

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 never again have to keep it hidden.

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 ero.

That's the number ero.

You can also 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, visit the iHeartRadio app, Apple Podcasts, or wherever you listen to your favorite shows.