September 13, 2022 • 32 mins
The pandemic upended nearly everyone’s lives. It caused people to reevaluate their jobs, their relationships, their lives. For Lauren, the pandemic meant a collapse of her daily routine. When the day-to-day fell apart, so did Lauren. After a while, she needed to understand why. Her creeping suspicion that there was something going on in her brain got louder and louder. So she did something about it.
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Speaker 1 (00:15):
Pushkin. I was eighteen years old when I realized that
I might be a homosexual. One day, I woke up
and just had this feeling. It was just a sort
of mist that descended on me. The phrase I think
I might be gay, I think I might be gay,
I think I might be gay kept repeating in my head,
(00:37):
and at first it scared the shit out of me.
I'm sure all you heterosexuals experienced a similar terror when
you realized you might be straight. Jokes aside. I couldn't
point to one defining moment where I knew I was gay.
I just felt it, And it turns out the feeling
was totally right on. I'm super gay, And that's kind
(00:59):
of the way I experienced the inkling that I might
be autistic. It was just waves lapping up on my
shores with increasing intensity, not spurred by an sent that happened,
or a book I read or a YouTube video I watched,
just a steady ebb and flow of a feeling inside
my brain. It was like, what if I'm autistic and
(01:19):
I might be autistic. I don't want to be autistic?
Am I autistic? I can't possibly be autistic, which in
itself seems a little autistic. But if I had to
point to one moment when that gentle undulation of maybe
I'm autistic turned into one hundred foot walls of water
crashing down on me, it was March twenty twenty, and
(01:41):
we all know what that month was. Hello, COVID times,
you're listening to the Loudest Girl in the World, which
is not your mom. It's me, Lauren Ober. The Loudest
Girl in the World is a show about finding yourself
broken in a pretty dark place and emerging from that
(02:03):
place a mostly glued back together person. My life before
the pandemic began was pretty simple and orderly. I had
my routines, wake up at eight am, feed dog, gopher, walk,
(02:29):
make breakfast, put my face on for the day, out
the door by ten to my favorite cafe, which also
doubled us my office. Then came March twenty twenty. There
is almost no part of twenty twenty that I remember
with any degree of accuracy except March. March was a doozy.
(02:51):
March was the beginning of our collective undoing. March was
a total piece of shit. Everyone has their own narrative
about how that month rolled out. They all start something
like this good evening, thanks for joining us. The World
Health Organization has now confirmed what many epidemiologists have been
(03:11):
saying for weeks. The coronavirus is a pandemic. Because I
am temperamentally unsuited to work in an office, Coffee shops
have historically been my own personal coworking spaces, and for
the past five or six years, there's one cafe that
has served as a home base of source. Hi, how
are you? Big Bear Cafe is a neighborhood anchor, and
(03:34):
it makes its home in a two story brick building
covered in ivy whose interior I would describe as rustic,
tumble down, and it is one of the places in
DC where I feel most myself. Hike care are you may?
I have a butterscotch scone. I'm a cafe regular, one
of those customers who knows the names of all the
(03:56):
baristas and their moms and their dogs. I love being
a regular places. It makes me feel like I belong
to something, and I would say I most certainly belong
to Big Bear. In nineteen I was the cafe's third
best customer, an honor that I feel should be included
not only on my CV but also engraved on my headstone.
(04:17):
Thank you. I appreciate it. So yeah, I love the place,
but with apologies to the cafes owner Stu. I don't
love Big Bear because of the food, which is food,
or the coffee which I don't drink, or the Wi
Fi which is only slightly faster than dial up. I
(04:38):
love it because of its charming, rotating cast of characters,
all of whom know that I am an icy addict
and served me accordingly. I also love Big Bear because
it is part of my routine, and I am deeply
attached to my routine. Okay, or I was. Five days
(05:01):
after the World Health Organization declared COVID a pandemic, all
the restaurants, bars and cafes and DC closed. That was
the beginning of my upending, because it meant that I
would not be popping over to Big Bear for a
day's worth of work in a perfectly fine sandwich, not
that week or the week after that, or that or
(05:21):
that or that. In an instant, my routine sailed out.
The window. Pundits kept saying that life as we knew
it had changed forever, which was really not going to
(05:42):
work for me. The COVID nineteen pandemic has transformed all
our lives. Lockdowns have forced us to change how we socialize,
how we shot work. Oh, lady from the economists, get
into it, sell it to me, honey. The results showed
(06:03):
that the world is never going to be the same again.
Somehow dooms stay. Prophecies don't sound so bad when they're
delivered with a British accent. Anyway, at that point in
the pandemic, I was like, oh, hell, no, things will
and must go back to normal, or at least I
had to make things normal for myself. So I continued
(06:24):
to pack up my laptop and go to Big Bear,
even though they weren't open. I would put on real clothes,
hop on my bike and pedal down to the cafe.
Then I would sit on an empty patio, pull out
my laptop, hot spot off my phone, and try to
get some work done. Recently, I made that admission to
my young friend Kayla, who was the manager there at
(06:45):
the time. So I came here when you had shut down,
like nobody was here. I guess I want to know, like,
did you know that I was doing that? No, No,
we didn't know you were doing that. STU probably knew
he probably saw you a couple of times, but of
(07:05):
course we don't really care what you're doing here. It
like it kind of seemed sad, like like like, is
it sad to you that I was doing that? Or
were you? Though? No, this not I'd totally get that, Like, say,
(07:25):
if you forced yourself to like stay in the house,
you probably would have been so sad. Sure, Kayla and
the cafe crew might not have been fussed by me
camping out on the patio by myself when they were closed.
They're good eggs like that, But in retrospect, my reaction
to the shutdown doesn't feel entirely typical or even that
(07:46):
well thought out. I mean, it didn't even really work.
The umbrella tables were put away, and the spring sun
was relentless, I couldn't see my laptop screen, my cell
phone WiFi was spotty, and I had to bring my
own iced tea. Dumb. The whole thing seemed a little
bananas also kind of pathetic, and if I'm being honest,
(08:07):
like a teeny bit stockery looking back, maybe all this
holding onto normalcy at all costs when it doesn't even
make sense. Whack a donis should have been a clue
that something was up with my brain. There were other clues,
like the whole grocery shopping for two weeks worth of
(08:29):
supplies thing. I remember having a huge meltdown when my
partner Hannah suggested I consider doing this to prepare for
any temporary grocery closures. That was in the days of
magical thinking, when we thought the pandemic would miraculously blow
over in less than a month. Hilarious. When Hannah told
me I might want to go do a big shop,
(08:50):
I lost it. It went a little something like this
location my kitchen time mid March, Hannah, I think you
really need to buy two weeks worth of groceries because
we just don't know how this thing is going to go. Me,
why do you think I can chop two weeks worth
of groceries. I can barely shop for one week of
(09:12):
groceries one day of groceries. I don't know how to
do that. That's so stressful. Why are you making me
do that? I can't cute crying and seen as a
person who has lived by herself for her whole adult life,
I shop when I need food, and I shop for
one The idea of prepping for weeks, even just days
(09:32):
worth of meals laughable, unthinkable, impossible. I just can't wrap
my tiny brain around that kind of planning. My executive
functioning doesn't seem to extend to comestibles, which is why
Hannah's simple suggestion felt so destabilizing. I have my routine,
my way of doing things, and to deviate from that
(09:55):
feels like being on one of those spinny amusement park
rides where you're whirling around and all of a sudden,
the bottom drops out. It's a lack of control I
don't like to think about. And yet that's exactly what
the pandemic did. It stripped all of us of control
over our own lives, over our comings and goings, our
safe havens, our good times. Now seems like a good
(10:20):
time to acknowledge that pouting over your favorite coffee shop
closing or having to do extra grocery shopping seems ridiculous
when actual people were literally dying from a mystery virus
floating in the air. I know that, and if I
could hug every nurse and respiratory therapist and paramedic who
had to muscle through death after death after death, I would,
(10:45):
But also the pandemic took a toll on all of us,
maybe just in smaller, less visible ways, lost jobs and
fractured relationships and hard truths. For me, the pandemic turned
me upside down and shook me out like a lunchroom bully,
and it fundamentally changed what I thought I knew about myself.
(11:09):
Sitting at Big Bear and shopping for groceries every few days,
and riding my bike to my recording studio and heading
out for lunch every day and going to the movies
were just some of the things that made me feel stable,
that helped me cope in a world where I never
quite felt like I fit like all of the bad
thoughts I had about myself could mostly be held at bay,
(11:30):
so long as I had this scaffolding in place to
hold me up. And then, without much warning, the scaffolding collapsed.
And when the scaffolding collapses, the meltdowns come. And what
(11:51):
exactly is a meltdown? You ask? I appreciate the question.
Please allow me to introduce the esteemed doctor of nothing,
doctor ATISMO oh, thank you. Lorn. Meltdowns are extreme emotional responses,
trink it by the inability to dissipate stress the stress
(12:13):
that precipitates meltdowns can have specific triggers. Those can include
unexpected changes in plans, loud noises, weird touches, feelings of inadequacy,
feelings of guilt or shame, conflict with a loved one,
too much social interaction, not enough social interaction, missing the bus,
crowded stores, making a mistake, being misunderstood, being told what
(12:34):
to do, being at the end of your Tessa, your
stupid dumb neighbors doing karaoke at three in the afternoon.
As you can see, systimulus is often mild, though it
does not feel that way to an autistic person. Meltdowns
tend to be a complete emotional collapse that can also
(12:55):
be accompanied by a range of physiological responses. Those include,
but are not limited to, increased heart rate, hyperventilation, shaking
or trembling, headache, disorientation, sweating, growth, confused, and just really
feeling like shit. Meltdowns are very distressing for the person
(13:16):
having them, as well as for people who might witness them.
But meltdowns are not timber tantrums. The person experiencing the
meltdown is not trying to get their way or extract
anything from anyone. Watching Zay are simply suffering an intense
response to an overwhelming situation. So if you see a
(13:37):
meltdown happen out in the world, don't be a jerk.
That is my medical advice, and I am an expert,
so you have to listen to me. Thanks doctor Atizmo,
You're welcome. I talked to my partner Hannah about this recently.
(13:58):
It's like you see yourself melting down, melting down, and
like suddenly, like all of your masking and coping mechanisms
are kind of like falling apart. F why I masking
is working real hard just to seem like everyone else.
It's also called camouflaging, like hiding in plain sight. Well
also because if you're in your house all the time,
what are you asking for? Yeah, that's what I said before.
(14:20):
What are you asking for? It's like that I'm not
wearing a bra, I'm not doing this. It would be
like all of your kind of avoidance coping mechanisms, which
we will label masking, that whole system that you've set
up over forty two years of like I can figure
out how to do this, and I hold myself together
like this, and I go to Big Bear and I
know how to be in social situations, and then I
(14:42):
know how to blah blah blah, Like the whole system
that you have figured out for yourself to mask pandemic
comes and it all falls apart, like it doesn't work anymore,
it's not necessary, it's not the appropriate one, Like it
just doesn't work and it is not right for the moment,
all that upheaval, that inability to cope laid a few
(15:03):
things bear for me, like this isn't right, this isn't normal.
I just felt so off. It was like a confluence
of all of these things, and then it sort of lockdown.
It's like your attention just gets laser focused, Like my
attention got laser focused on a couple of things, my
(15:29):
work and this idea, the idea of me possibly being
on the spectrum. I couldn't cook for myself. I could
barely do my laundry, like it was so disordered. There
are certain like like naked truth that emerge when you're
like trapped in a house by yourself during a pandemic.
(15:52):
Then you otherwise might be able to more easily avoid
and they suddenly start to like consume you. And then
the maildowns came also like I had to think about
the particular flavor of meltdown that I had, which seems
completely irrational in ways, like how people describing in solitary
(16:16):
and it makes you nuts because you're just like there
by yourself with your problems and your thoughts. It's a
little bit more like that. It's like you see yourself
melting down, melting down, and like suddenly like all of
your masking and coping mechanisms are kind of like falling apart. Okay, sidebar,
I'm not comparing my experience of the pandemic with that
of people in solitary confinement. That is an unconsortably cruel
(16:38):
punishment that no humans should be subjected to. I'm sure
there is a way in which a pandemic slash quarantine,
you know, forces you to see the elephant in the room.
We'll find out what that elephant in the room was
after a quick break. How's that for a transition. When
(17:07):
you're an adult looking for any order of diagnosis for
a neurodivergent condition, be it autism, ADHD, sensory processing issues, whatever,
good luck to you. Because the world of support for
neurodivergent people is mostly set up to serve children, and
while I could laugh at farts all day long, I
am not a child. I am an adult with a
(17:29):
job and health insurance and many connections in my community.
But when it came time to find a diagnostician who
was qualified to work with adults, and particularly adults who
are not men, it was like needle in haystack times.
At first, I didn't even know who could diagnose me.
Would it be a psychiatrist or a neurologist, or like
(17:49):
a dude on the street. The answer was it depended.
Autism spectrum disorder, as it's clinically referred to, is not
a mental health condition. It is technically a developmental disability,
though there can be co occurring mental health issues, and
autism is highly visual. When I was looking for a diagnosis,
(18:12):
I happened upon this saying, if you know one autistic person,
you know one autistic person. Cool. So that means that
landing on a professional who was qualified to evaluate me
was not as simple as thumbing through the yellow pages,
and not just because the yellow pages barely exist. I
started by googling autism and Washington, DC keyword search on
(18:36):
point I landed on a local organization for autistic folks
in DC. They had a resource page on their website,
and I emailed two of the psychologists on there. One
wrote back that because of telemedicine rules, she could only
see virtual clients in Maryland or Virginia, not DC, and
the other responded that an evaluation would cost upwards of
(18:58):
thirty five hundred dollars and no, they didn't take insurance.
Then I got a recommendation from a friend of a friend.
The note read, doctor White is fabulous and one hundred
percent gets autism spectrum disorder. Most likely does not take
any insurance. But I reached out anyway because maybe she'd
(19:19):
be more reasonable than the other guy if I was
going to have to pay out a pocket and she was,
but she couldn't get me on her schedule. The more
I kept running into brick walls in my search for
an autism evaluation, the more urgent it became to sort
this out. I almost felt panicky about it, like I
(19:41):
just see someone about this, or I'm going to combust
kind of feeling. I reached out to another friend of
a friend who had recently been diagnosed to see what
their experience was, and there was even worse. The fact
that I was black and a fab assigned female at
birth is what took forty one fucking years for me
to get a diagnosis right. And that's ridiculous. It's absolutely ridiculous.
(20:03):
Asiatu that's their name, told me that they had initially
just diagnosed themselves because they didn't want to deal with therapists.
I didn't like therapy. Hated therapy. Yeah, I don't like it.
It's a system, it's racist, it's misogynistic. The way that
therapists are taught is also very ablest, and I just
don't like it. And so I was just like, oh, man,
(20:24):
I really don't want to fucking go through therapy again
to get this diagnosis right. And I was like, okay,
so if I do happen to want to pursue a diagnosis,
I was like, I need someone black, I need someone
non man, and I need someone preferably queer and just
ideally autistic. And I found my unicorn. Sadly, Aziato's unicorn
(20:48):
was on sabbatical, so I couldn't go see them. But
something Aziato mentions stuck in my brain self diagnosis. I
started researching what it meant to basically confirm your own suspicions,
like I've diagnosed my own facial rashes and lady problems.
(21:08):
Is it any less valid to diagnose myself as autistic?
I didn't really know, so I watched some YouTube videos
on the topic is self diagnosis? Do I think that
self diagnosing is okay? Yes? Yes I do. Please don't
think that you're any less valid because you don't have
access to a diagnosis. What is valid even me? Because
(21:32):
at the end of the day, only you can know
how you feel and think, and only you know who
you are deep inside, and who I am deep inside
is a person who prefers to have her own suspicions
confirmed by medical professionals. Self identification, however, valid just wasn't
the answer I was looking for. So I was going
(21:52):
to get that evaluation, honey. Finally I got connected to
a pair of women I affectionately refer to as my
autism fairy godmothers. Donna Henderson is a neuropsychologist and Sarah
Whaland has a PhD in cognitive psychology. Both work with
neurodivergent folks, mostly kids, and together they've been writing a
(22:15):
book about subtle autism, basically autism that is difficult to detect,
so I asked them for help, like, I gotta get evaluated,
but why can't I figure this out? Am I a dummy?
Donna said, I'm not. Literally every single week, both Sarah
and I see a patient of family where there's clearly autism,
(22:37):
and it fell through the cracks over and over and
over again. It's so endlessly frustrating that people can't understand
themselves in this way when it can be so helpful.
It's just it's inaccessible, and it's frustrating my autism. Very
godmother suggested that I look into this autistic psychotherapist in
Canada whose practice specifically addressed accessible autism evaluations and support.
(23:02):
Her name is doctor Natlie Engelbrick, and she is really
into autism, Like, not only is it her job, also
her hobby. She and her husband and her best friend
like research neurodiversity on the weekend for funzies. The godmother said,
doctor Natalie's assessment method seemed thorough and fairly standard, and
at this point I was done with trying to find
(23:24):
someone who took insurance or didn't cost of bajillion dollars.
It's so frustrating to know that care exists, but to
not have any way to access it, and good Lord,
I have it easier than most. The system is fucked anyway.
Doctor Natalie's fees were reasonable and she was looking like
a real option. After the break, I get cracking on
(23:46):
making it happen or something. In between bites of chips
and salsa at a little Mexican restaurant in Wilmington, North Carolina,
(24:07):
of all places, I just felt like enough was enough.
I was ready to pull the trigger on my autism suspicions.
Let's do this thing, doctor Natalie. So before my enchilota came,
I pulled out my phone and composed this email. Dear
doctor Ingelbricht, I am writing to inquire about the possibility
(24:28):
of getting evaluated for autism. I've suspected that i might
be autistic for some time, but I've had a hard
time landing on a professional who might be able to
evaluate me. I was referred to you by a psychologist
friend here in the US, and I'd love to get
some more information as to what is involved in this process.
Many thanks, sincerely, Lauren over And then it happened. It started.
(24:51):
Oh fantastic. I connected with doctor Natalie, going, can you
give me an ID. Say my name is. I am
a bloppy blop whatever you all your titles are, however
you want to identify yourself, I'm sure so you mean
right now, just say my name is yep, my name
is doctor Natalie Angelbrecht, and I am a registered psychotherapist
(25:11):
as well as an atropathic doctor. One reason for doctor
Natalie's clinical interest in autism is that doctor Natalie is autistic,
so is her husband Martin. A lot of my practice
is autism. I do a lot of assessments and diagnoses,
and I also see a lot of people in the spectrum.
(25:34):
And that just was something that sort of quietly happened.
She had been writing a lot about autism when Martin
encouraged her to broaden her practice to assessments. I was like,
I don't know if it's needed, you know. And then
people start finding me that I'm this psychotherapist that actually
has autism herself, and I didn't realize that would be
(25:58):
something that would be a good thing, But turns out
people like to get help from folks who are like them. Also,
studies have shown that people with spectrum traits have slightly
higher social psychological skills, meaning that according to these studies,
autistic people are marginally better at accurately judging the feelings, thoughts,
(26:21):
and behaviors of people as a group, though not necessarily individuals.
So autistic therapists are for sure a good thing. Did
I just blow your mind? We sort of come off
as a psychic, but we're not. We're picking up patterns
that we don't even really know we're picking up quite often.
(26:42):
So that's doctor Natalie. She's not a psychic, but she's
into science, she's into autism, and she's into being Canadian. A.
I don't know about that last part. I just made
that up. After talking with doctor Natalie, I felt comfortable
putting my trust in her into her methodology. First step,
pay her the money. The whole enterprise an initial assessment
(27:04):
and a follow up diagnosis if needed costs under a
thousand dollars, which isn't cheap, but hey, doctor Natalie has
to eat too. I recorded myself walking through the whole
payment process in November of pandemic year number one. So strange.
Just feels so transactional, like not how I anticipated doing
(27:27):
some kind of screening. I mean, after all of the
different people I reached out to and contacted. You know
about whether or not they do screenings of adults, and
whether they take insurance, and how much it costs and
all that stuff. Just to be sort of plunking down
three hundred and fifty dollars for an initial assessment seems
(27:49):
like too easy, but also like, is this how medicine
is supposed to work? I believe that in the absence
of an equitable, affordable system of care with competent, conscientious providers.
The answer to that question is yes. Oh great, Now
what we perceived your payment for autism screening assessment. I'll
(28:16):
just screenshot that once we squared up. Doctor Natalie sent
me a screening questionnaire which consisted of twelve written questions
and links to six standard psychometric tests used in autism evaluations.
Who thank you for your payment. Upload your screening questionnaire.
(28:38):
Use this upload link for your documents. Girlfriend Hannah was
over when I got the screening packet and the email. Wait,
hold on the screening questionnaire. Huh? If you heard how
you read that, it'd be like, Oh, don't worry about it,
just don't don't bother what upload your questionnaire? I literally
(29:00):
did not sound like that. Literally sounded like that it's
not true. Wait, I gotta read the directions. I read
a few of the twelve questions out loud before I
sat down to answer them. What differences in social interactions
do you experience? Which as emotions, interests, initiating, conversations, interrupting?
Now I know I went to talk. That's like a
(29:24):
big one for me. What is your experience with routine?
How do you feel about changes in transition? I don't
like them? Okay? Could I write that? Yeah? I think
that you need to set aside. What is your experience
with the routine? I like them and I don't like
when it changes. Do you regularly eat the same food
(29:46):
or wear the same clothes? What would you answer for me? Yes? Okay?
So I got the written questions, I got the six
psychometric tests. I was ready to do the thing, and
then many days later, I haven't done the test yet.
(30:08):
Do you want to do it right now? No? Why
haven't you done it? I don't know. Well, let's do
it right now. I can't do it with you. It's
like a personal thing. I guess quite better if you
do it with me. Why would I do it with you?
(30:30):
Because you're gonna lie? Got gonna lie? Yeah, I'm gonna
hold you out. You're gonna be like, they're gonna ask
a question like like do you speak in a loud voice?
And you're gonna be like, no, what are you talking about?
Of course I know that I speaking jobs. It's gonna
be like, no, I han't about as much as anyone else.
First of all, of course, I know those things rides
(30:50):
smoothly on an airplane. I'm like, yeah, if I just
get my snacks, what's wrong with having snacks on the airplane? Exactly?
That's how you're gonna answer all the questions. Of course,
Hannah is goofing with me. Our rapport is just sometimes
pokey like that. She didn't actually want to do the
evaluation with me. She was just trying to ease the
(31:12):
anxiety and trepidation of the whole thing. Because it's scary
to answer those types of questions and provide at least
three examples that support your answers and then send them
along to doctor Natalie. It's like flaying yourself in front
of a perfect stranger, like here are my guts. But
if I wanted to see this thing through, if I
(31:33):
wanted to get some answers, I had to put pen
to paper and start answering, And so I did You've
been listening to the Loudest Girl in the World. It's hosted, written,
end executive produced by me Lauren Ober. Our senior producer
is writer Alsop. Our associate producer is David Jaw. Sophie
(31:56):
Crane is our showrunner and senior editor Jay Gorski is
our mix engineer. Music composed by my autistic Kiwie Pale
the Inimitable Lady Hawk. Our artwork was created by the
autistic illustrator Loretta Ipsump. The show was fact checked by
Andrea Lopez Cruzado, and our autism consultant is Sarah Cappett.
(32:17):
Our executive producers are Mia Lobell and Lita Mullat. Doctor
Autismo was played by theatrical genius Kevin Zach. Check him
out on Instagram at Kevin J. Zach That's zach Zak.
(32:38):
You can find doctor Natalie Engelbrecht online at Embrace hyphen
Autism dot com. Special thanks to Aziatu, Laoie Kala Gray
and my autism fairy godmothers, doctor Donna Henderson and doctor
Sarah Wayland. And thanks to you friend for listening
Pushkin. I was eighteen years old when I realized that
I might be a homosexual. One day, I woke up
and just had this feeling. It was just a sort
of mist that descended on me. The phrase I think
I might be gay, I think I might be gay,
I think I might be gay kept repeating in my head,
(00:37):
and at first it scared the shit out of me.
I'm sure all you heterosexuals experienced a similar terror when
you realized you might be straight. Jokes aside. I couldn't
point to one defining moment where I knew I was gay.
I just felt it, And it turns out the feeling
was totally right on. I'm super gay, And that's kind
(00:59):
of the way I experienced the inkling that I might
be autistic. It was just waves lapping up on my
shores with increasing intensity, not spurred by an sent that happened,
or a book I read or a YouTube video I watched,
just a steady ebb and flow of a feeling inside
my brain. It was like, what if I'm autistic and
(01:19):
I might be autistic. I don't want to be autistic?
Am I autistic? I can't possibly be autistic, which in
itself seems a little autistic. But if I had to
point to one moment when that gentle undulation of maybe
I'm autistic turned into one hundred foot walls of water
crashing down on me, it was March twenty twenty, and
(01:41):
we all know what that month was. Hello, COVID times,
you're listening to the Loudest Girl in the World, which
is not your mom. It's me, Lauren Ober. The Loudest
Girl in the World is a show about finding yourself
broken in a pretty dark place and emerging from that
(02:03):
place a mostly glued back together person. My life before
the pandemic began was pretty simple and orderly. I had
my routines, wake up at eight am, feed dog, gopher, walk,
(02:29):
make breakfast, put my face on for the day, out
the door by ten to my favorite cafe, which also
doubled us my office. Then came March twenty twenty. There
is almost no part of twenty twenty that I remember
with any degree of accuracy except March. March was a doozy.
(02:51):
March was the beginning of our collective undoing. March was
a total piece of shit. Everyone has their own narrative
about how that month rolled out. They all start something
like this good evening, thanks for joining us. The World
Health Organization has now confirmed what many epidemiologists have been
(03:11):
saying for weeks. The coronavirus is a pandemic. Because I
am temperamentally unsuited to work in an office, Coffee shops
have historically been my own personal coworking spaces, and for
the past five or six years, there's one cafe that
has served as a home base of source. Hi, how
are you? Big Bear Cafe is a neighborhood anchor, and
(03:34):
it makes its home in a two story brick building
covered in ivy whose interior I would describe as rustic,
tumble down, and it is one of the places in
DC where I feel most myself. Hike care are you may?
I have a butterscotch scone. I'm a cafe regular, one
of those customers who knows the names of all the
(03:56):
baristas and their moms and their dogs. I love being
a regular places. It makes me feel like I belong
to something, and I would say I most certainly belong
to Big Bear. In nineteen I was the cafe's third
best customer, an honor that I feel should be included
not only on my CV but also engraved on my headstone.
(04:17):
Thank you. I appreciate it. So yeah, I love the place,
but with apologies to the cafes owner Stu. I don't
love Big Bear because of the food, which is food,
or the coffee which I don't drink, or the Wi
Fi which is only slightly faster than dial up. I
(04:38):
love it because of its charming, rotating cast of characters,
all of whom know that I am an icy addict
and served me accordingly. I also love Big Bear because
it is part of my routine, and I am deeply
attached to my routine. Okay, or I was. Five days
(05:01):
after the World Health Organization declared COVID a pandemic, all
the restaurants, bars and cafes and DC closed. That was
the beginning of my upending, because it meant that I
would not be popping over to Big Bear for a
day's worth of work in a perfectly fine sandwich, not
that week or the week after that, or that or
(05:21):
that or that. In an instant, my routine sailed out.
The window. Pundits kept saying that life as we knew
it had changed forever, which was really not going to
(05:42):
work for me. The COVID nineteen pandemic has transformed all
our lives. Lockdowns have forced us to change how we socialize,
how we shot work. Oh, lady from the economists, get
into it, sell it to me, honey. The results showed
(06:03):
that the world is never going to be the same again.
Somehow dooms stay. Prophecies don't sound so bad when they're
delivered with a British accent. Anyway, at that point in
the pandemic, I was like, oh, hell, no, things will
and must go back to normal, or at least I
had to make things normal for myself. So I continued
(06:24):
to pack up my laptop and go to Big Bear,
even though they weren't open. I would put on real clothes,
hop on my bike and pedal down to the cafe.
Then I would sit on an empty patio, pull out
my laptop, hot spot off my phone, and try to
get some work done. Recently, I made that admission to
my young friend Kayla, who was the manager there at
(06:45):
the time. So I came here when you had shut down,
like nobody was here. I guess I want to know, like,
did you know that I was doing that? No, No,
we didn't know you were doing that. STU probably knew
he probably saw you a couple of times, but of
(07:05):
course we don't really care what you're doing here. It
like it kind of seemed sad, like like like, is
it sad to you that I was doing that? Or
were you? Though? No, this not I'd totally get that, Like, say,
(07:25):
if you forced yourself to like stay in the house,
you probably would have been so sad. Sure, Kayla and
the cafe crew might not have been fussed by me
camping out on the patio by myself when they were closed.
They're good eggs like that, But in retrospect, my reaction
to the shutdown doesn't feel entirely typical or even that
(07:46):
well thought out. I mean, it didn't even really work.
The umbrella tables were put away, and the spring sun
was relentless, I couldn't see my laptop screen, my cell
phone WiFi was spotty, and I had to bring my
own iced tea. Dumb. The whole thing seemed a little
bananas also kind of pathetic, and if I'm being honest,
(08:07):
like a teeny bit stockery looking back, maybe all this
holding onto normalcy at all costs when it doesn't even
make sense. Whack a donis should have been a clue
that something was up with my brain. There were other clues,
like the whole grocery shopping for two weeks worth of
(08:29):
supplies thing. I remember having a huge meltdown when my
partner Hannah suggested I consider doing this to prepare for
any temporary grocery closures. That was in the days of
magical thinking, when we thought the pandemic would miraculously blow
over in less than a month. Hilarious. When Hannah told
me I might want to go do a big shop,
(08:50):
I lost it. It went a little something like this
location my kitchen time mid March, Hannah, I think you
really need to buy two weeks worth of groceries because
we just don't know how this thing is going to go. Me,
why do you think I can chop two weeks worth
of groceries. I can barely shop for one week of
(09:12):
groceries one day of groceries. I don't know how to
do that. That's so stressful. Why are you making me
do that? I can't cute crying and seen as a
person who has lived by herself for her whole adult life,
I shop when I need food, and I shop for
one The idea of prepping for weeks, even just days
(09:32):
worth of meals laughable, unthinkable, impossible. I just can't wrap
my tiny brain around that kind of planning. My executive
functioning doesn't seem to extend to comestibles, which is why
Hannah's simple suggestion felt so destabilizing. I have my routine,
my way of doing things, and to deviate from that
(09:55):
feels like being on one of those spinny amusement park
rides where you're whirling around and all of a sudden,
the bottom drops out. It's a lack of control I
don't like to think about. And yet that's exactly what
the pandemic did. It stripped all of us of control
over our own lives, over our comings and goings, our
safe havens, our good times. Now seems like a good
(10:20):
time to acknowledge that pouting over your favorite coffee shop
closing or having to do extra grocery shopping seems ridiculous
when actual people were literally dying from a mystery virus
floating in the air. I know that, and if I
could hug every nurse and respiratory therapist and paramedic who
had to muscle through death after death after death, I would,
(10:45):
But also the pandemic took a toll on all of us,
maybe just in smaller, less visible ways, lost jobs and
fractured relationships and hard truths. For me, the pandemic turned
me upside down and shook me out like a lunchroom bully,
and it fundamentally changed what I thought I knew about myself.
(11:09):
Sitting at Big Bear and shopping for groceries every few days,
and riding my bike to my recording studio and heading
out for lunch every day and going to the movies
were just some of the things that made me feel stable,
that helped me cope in a world where I never
quite felt like I fit like all of the bad
thoughts I had about myself could mostly be held at bay,
(11:30):
so long as I had this scaffolding in place to
hold me up. And then, without much warning, the scaffolding collapsed.
And when the scaffolding collapses, the meltdowns come. And what
(11:51):
exactly is a meltdown? You ask? I appreciate the question.
Please allow me to introduce the esteemed doctor of nothing,
doctor ATISMO oh, thank you. Lorn. Meltdowns are extreme emotional responses,
trink it by the inability to dissipate stress the stress
(12:13):
that precipitates meltdowns can have specific triggers. Those can include
unexpected changes in plans, loud noises, weird touches, feelings of inadequacy,
feelings of guilt or shame, conflict with a loved one,
too much social interaction, not enough social interaction, missing the bus,
crowded stores, making a mistake, being misunderstood, being told what
(12:34):
to do, being at the end of your Tessa, your
stupid dumb neighbors doing karaoke at three in the afternoon.
As you can see, systimulus is often mild, though it
does not feel that way to an autistic person. Meltdowns
tend to be a complete emotional collapse that can also
(12:55):
be accompanied by a range of physiological responses. Those include,
but are not limited to, increased heart rate, hyperventilation, shaking
or trembling, headache, disorientation, sweating, growth, confused, and just really
feeling like shit. Meltdowns are very distressing for the person
(13:16):
having them, as well as for people who might witness them.
But meltdowns are not timber tantrums. The person experiencing the
meltdown is not trying to get their way or extract
anything from anyone. Watching Zay are simply suffering an intense
response to an overwhelming situation. So if you see a
(13:37):
meltdown happen out in the world, don't be a jerk.
That is my medical advice, and I am an expert,
so you have to listen to me. Thanks doctor Atizmo,
You're welcome. I talked to my partner Hannah about this recently.
(13:58):
It's like you see yourself melting down, melting down, and
like suddenly, like all of your masking and coping mechanisms
are kind of like falling apart. F why I masking
is working real hard just to seem like everyone else.
It's also called camouflaging, like hiding in plain sight. Well
also because if you're in your house all the time,
what are you asking for? Yeah, that's what I said before.
(14:20):
What are you asking for? It's like that I'm not
wearing a bra, I'm not doing this. It would be
like all of your kind of avoidance coping mechanisms, which
we will label masking, that whole system that you've set
up over forty two years of like I can figure
out how to do this, and I hold myself together
like this, and I go to Big Bear and I
know how to be in social situations, and then I
(14:42):
know how to blah blah blah, Like the whole system
that you have figured out for yourself to mask pandemic
comes and it all falls apart, like it doesn't work anymore,
it's not necessary, it's not the appropriate one, Like it
just doesn't work and it is not right for the moment,
all that upheaval, that inability to cope laid a few
(15:03):
things bear for me, like this isn't right, this isn't normal.
I just felt so off. It was like a confluence
of all of these things, and then it sort of lockdown.
It's like your attention just gets laser focused, Like my
attention got laser focused on a couple of things, my
(15:29):
work and this idea, the idea of me possibly being
on the spectrum. I couldn't cook for myself. I could
barely do my laundry, like it was so disordered. There
are certain like like naked truth that emerge when you're
like trapped in a house by yourself during a pandemic.
(15:52):
Then you otherwise might be able to more easily avoid
and they suddenly start to like consume you. And then
the maildowns came also like I had to think about
the particular flavor of meltdown that I had, which seems
completely irrational in ways, like how people describing in solitary
(16:16):
and it makes you nuts because you're just like there
by yourself with your problems and your thoughts. It's a
little bit more like that. It's like you see yourself
melting down, melting down, and like suddenly like all of
your masking and coping mechanisms are kind of like falling apart. Okay, sidebar,
I'm not comparing my experience of the pandemic with that
of people in solitary confinement. That is an unconsortably cruel
(16:38):
punishment that no humans should be subjected to. I'm sure
there is a way in which a pandemic slash quarantine,
you know, forces you to see the elephant in the room.
We'll find out what that elephant in the room was
after a quick break. How's that for a transition. When
(17:07):
you're an adult looking for any order of diagnosis for
a neurodivergent condition, be it autism, ADHD, sensory processing issues, whatever,
good luck to you. Because the world of support for
neurodivergent people is mostly set up to serve children, and
while I could laugh at farts all day long, I
am not a child. I am an adult with a
(17:29):
job and health insurance and many connections in my community.
But when it came time to find a diagnostician who
was qualified to work with adults, and particularly adults who
are not men, it was like needle in haystack times.
At first, I didn't even know who could diagnose me.
Would it be a psychiatrist or a neurologist, or like
(17:49):
a dude on the street. The answer was it depended.
Autism spectrum disorder, as it's clinically referred to, is not
a mental health condition. It is technically a developmental disability,
though there can be co occurring mental health issues, and
autism is highly visual. When I was looking for a diagnosis,
(18:12):
I happened upon this saying, if you know one autistic person,
you know one autistic person. Cool. So that means that
landing on a professional who was qualified to evaluate me
was not as simple as thumbing through the yellow pages,
and not just because the yellow pages barely exist. I
started by googling autism and Washington, DC keyword search on
(18:36):
point I landed on a local organization for autistic folks
in DC. They had a resource page on their website,
and I emailed two of the psychologists on there. One
wrote back that because of telemedicine rules, she could only
see virtual clients in Maryland or Virginia, not DC, and
the other responded that an evaluation would cost upwards of
(18:58):
thirty five hundred dollars and no, they didn't take insurance.
Then I got a recommendation from a friend of a friend.
The note read, doctor White is fabulous and one hundred
percent gets autism spectrum disorder. Most likely does not take
any insurance. But I reached out anyway because maybe she'd
(19:19):
be more reasonable than the other guy if I was
going to have to pay out a pocket and she was,
but she couldn't get me on her schedule. The more
I kept running into brick walls in my search for
an autism evaluation, the more urgent it became to sort
this out. I almost felt panicky about it, like I
(19:41):
just see someone about this, or I'm going to combust
kind of feeling. I reached out to another friend of
a friend who had recently been diagnosed to see what
their experience was, and there was even worse. The fact
that I was black and a fab assigned female at
birth is what took forty one fucking years for me
to get a diagnosis right. And that's ridiculous. It's absolutely ridiculous.
(20:03):
Asiatu that's their name, told me that they had initially
just diagnosed themselves because they didn't want to deal with therapists.
I didn't like therapy. Hated therapy. Yeah, I don't like it.
It's a system, it's racist, it's misogynistic. The way that
therapists are taught is also very ablest, and I just
don't like it. And so I was just like, oh, man,
(20:24):
I really don't want to fucking go through therapy again
to get this diagnosis right. And I was like, okay,
so if I do happen to want to pursue a diagnosis,
I was like, I need someone black, I need someone
non man, and I need someone preferably queer and just
ideally autistic. And I found my unicorn. Sadly, Aziato's unicorn
(20:48):
was on sabbatical, so I couldn't go see them. But
something Aziato mentions stuck in my brain self diagnosis. I
started researching what it meant to basically confirm your own suspicions,
like I've diagnosed my own facial rashes and lady problems.
(21:08):
Is it any less valid to diagnose myself as autistic?
I didn't really know, so I watched some YouTube videos
on the topic is self diagnosis? Do I think that
self diagnosing is okay? Yes? Yes I do. Please don't
think that you're any less valid because you don't have
access to a diagnosis. What is valid even me? Because
(21:32):
at the end of the day, only you can know
how you feel and think, and only you know who
you are deep inside, and who I am deep inside
is a person who prefers to have her own suspicions
confirmed by medical professionals. Self identification, however, valid just wasn't
the answer I was looking for. So I was going
(21:52):
to get that evaluation, honey. Finally I got connected to
a pair of women I affectionately refer to as my
autism fairy godmothers. Donna Henderson is a neuropsychologist and Sarah
Whaland has a PhD in cognitive psychology. Both work with
neurodivergent folks, mostly kids, and together they've been writing a
(22:15):
book about subtle autism, basically autism that is difficult to detect,
so I asked them for help, like, I gotta get evaluated,
but why can't I figure this out? Am I a dummy?
Donna said, I'm not. Literally every single week, both Sarah
and I see a patient of family where there's clearly autism,
(22:37):
and it fell through the cracks over and over and
over again. It's so endlessly frustrating that people can't understand
themselves in this way when it can be so helpful.
It's just it's inaccessible, and it's frustrating my autism. Very
godmother suggested that I look into this autistic psychotherapist in
Canada whose practice specifically addressed accessible autism evaluations and support.
(23:02):
Her name is doctor Natlie Engelbrick, and she is really
into autism, Like, not only is it her job, also
her hobby. She and her husband and her best friend
like research neurodiversity on the weekend for funzies. The godmother said,
doctor Natalie's assessment method seemed thorough and fairly standard, and
at this point I was done with trying to find
(23:24):
someone who took insurance or didn't cost of bajillion dollars.
It's so frustrating to know that care exists, but to
not have any way to access it, and good Lord,
I have it easier than most. The system is fucked anyway.
Doctor Natalie's fees were reasonable and she was looking like
a real option. After the break, I get cracking on
(23:46):
making it happen or something. In between bites of chips
and salsa at a little Mexican restaurant in Wilmington, North Carolina,
(24:07):
of all places, I just felt like enough was enough.
I was ready to pull the trigger on my autism suspicions.
Let's do this thing, doctor Natalie. So before my enchilota came,
I pulled out my phone and composed this email. Dear
doctor Ingelbricht, I am writing to inquire about the possibility
(24:28):
of getting evaluated for autism. I've suspected that i might
be autistic for some time, but I've had a hard
time landing on a professional who might be able to
evaluate me. I was referred to you by a psychologist
friend here in the US, and I'd love to get
some more information as to what is involved in this process.
Many thanks, sincerely, Lauren over And then it happened. It started.
(24:51):
Oh fantastic. I connected with doctor Natalie, going, can you
give me an ID. Say my name is. I am
a bloppy blop whatever you all your titles are, however
you want to identify yourself, I'm sure so you mean
right now, just say my name is yep, my name
is doctor Natalie Angelbrecht, and I am a registered psychotherapist
(25:11):
as well as an atropathic doctor. One reason for doctor
Natalie's clinical interest in autism is that doctor Natalie is autistic,
so is her husband Martin. A lot of my practice
is autism. I do a lot of assessments and diagnoses,
and I also see a lot of people in the spectrum.
(25:34):
And that just was something that sort of quietly happened.
She had been writing a lot about autism when Martin
encouraged her to broaden her practice to assessments. I was like,
I don't know if it's needed, you know. And then
people start finding me that I'm this psychotherapist that actually
has autism herself, and I didn't realize that would be
(25:58):
something that would be a good thing, But turns out
people like to get help from folks who are like them. Also,
studies have shown that people with spectrum traits have slightly
higher social psychological skills, meaning that according to these studies,
autistic people are marginally better at accurately judging the feelings, thoughts,
(26:21):
and behaviors of people as a group, though not necessarily individuals.
So autistic therapists are for sure a good thing. Did
I just blow your mind? We sort of come off
as a psychic, but we're not. We're picking up patterns
that we don't even really know we're picking up quite often.
(26:42):
So that's doctor Natalie. She's not a psychic, but she's
into science, she's into autism, and she's into being Canadian. A.
I don't know about that last part. I just made
that up. After talking with doctor Natalie, I felt comfortable
putting my trust in her into her methodology. First step,
pay her the money. The whole enterprise an initial assessment
(27:04):
and a follow up diagnosis if needed costs under a
thousand dollars, which isn't cheap, but hey, doctor Natalie has
to eat too. I recorded myself walking through the whole
payment process in November of pandemic year number one. So strange.
Just feels so transactional, like not how I anticipated doing
(27:27):
some kind of screening. I mean, after all of the
different people I reached out to and contacted. You know
about whether or not they do screenings of adults, and
whether they take insurance, and how much it costs and
all that stuff. Just to be sort of plunking down
three hundred and fifty dollars for an initial assessment seems
(27:49):
like too easy, but also like, is this how medicine
is supposed to work? I believe that in the absence
of an equitable, affordable system of care with competent, conscientious providers.
The answer to that question is yes. Oh great, Now
what we perceived your payment for autism screening assessment. I'll
(28:16):
just screenshot that once we squared up. Doctor Natalie sent
me a screening questionnaire which consisted of twelve written questions
and links to six standard psychometric tests used in autism evaluations.
Who thank you for your payment. Upload your screening questionnaire.
(28:38):
Use this upload link for your documents. Girlfriend Hannah was
over when I got the screening packet and the email. Wait,
hold on the screening questionnaire. Huh? If you heard how
you read that, it'd be like, Oh, don't worry about it,
just don't don't bother what upload your questionnaire? I literally
(29:00):
did not sound like that. Literally sounded like that it's
not true. Wait, I gotta read the directions. I read
a few of the twelve questions out loud before I
sat down to answer them. What differences in social interactions
do you experience? Which as emotions, interests, initiating, conversations, interrupting?
Now I know I went to talk. That's like a
(29:24):
big one for me. What is your experience with routine?
How do you feel about changes in transition? I don't
like them? Okay? Could I write that? Yeah? I think
that you need to set aside. What is your experience
with the routine? I like them and I don't like
when it changes. Do you regularly eat the same food
(29:46):
or wear the same clothes? What would you answer for me? Yes? Okay?
So I got the written questions, I got the six
psychometric tests. I was ready to do the thing, and
then many days later, I haven't done the test yet.
(30:08):
Do you want to do it right now? No? Why
haven't you done it? I don't know. Well, let's do
it right now. I can't do it with you. It's
like a personal thing. I guess quite better if you
do it with me. Why would I do it with you?
(30:30):
Because you're gonna lie? Got gonna lie? Yeah, I'm gonna
hold you out. You're gonna be like, they're gonna ask
a question like like do you speak in a loud voice?
And you're gonna be like, no, what are you talking about?
Of course I know that I speaking jobs. It's gonna
be like, no, I han't about as much as anyone else.
First of all, of course, I know those things rides
(30:50):
smoothly on an airplane. I'm like, yeah, if I just
get my snacks, what's wrong with having snacks on the airplane? Exactly?
That's how you're gonna answer all the questions. Of course,
Hannah is goofing with me. Our rapport is just sometimes
pokey like that. She didn't actually want to do the
evaluation with me. She was just trying to ease the
(31:12):
anxiety and trepidation of the whole thing. Because it's scary
to answer those types of questions and provide at least
three examples that support your answers and then send them
along to doctor Natalie. It's like flaying yourself in front
of a perfect stranger, like here are my guts. But
if I wanted to see this thing through, if I
(31:33):
wanted to get some answers, I had to put pen
to paper and start answering, And so I did You've
been listening to the Loudest Girl in the World. It's hosted, written,
end executive produced by me Lauren Ober. Our senior producer
is writer Alsop. Our associate producer is David Jaw. Sophie
(31:56):
Crane is our showrunner and senior editor Jay Gorski is
our mix engineer. Music composed by my autistic Kiwie Pale
the Inimitable Lady Hawk. Our artwork was created by the
autistic illustrator Loretta Ipsump. The show was fact checked by
Andrea Lopez Cruzado, and our autism consultant is Sarah Cappett.
(32:17):
Our executive producers are Mia Lobell and Lita Mullat. Doctor
Autismo was played by theatrical genius Kevin Zach. Check him
out on Instagram at Kevin J. Zach That's zach Zak.
(32:38):
You can find doctor Natalie Engelbrecht online at Embrace hyphen
Autism dot com. Special thanks to Aziatu, Laoie Kala Gray
and my autism fairy godmothers, doctor Donna Henderson and doctor
Sarah Wayland. And thanks to you friend for listening
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