September 20, 2022 • 31 mins
If you want to get evaluated for autism, you have to take some tests. But the earliest autism evaluations suggested that autistic kids were like little robots who wore the same clothes every day and looked through people like they were ghosts. So when Lauren decided to get evaluated, she was stepping into a problematic history. Still, she needed to do it.
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Episode Transcript
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Speaker 1 (00:15):
Pushkin. A little content warning. We get into some pretty
troubling descriptions of autism from back in the day in
this episode, plus some deluxe feelings and some tears, so
keep that in mind when listening. Okay, onwards. I'm a
(00:40):
person who wants to know all the answers. It drove
my parents' nuts when I was a kid. I just
wanted to know everything, and this autism evaluation process was
no different. I didn't just want to blindly take a
bunch of tests and spill my guts out to a therapist.
I wanted to understand the legacy of autism diagnostics. So
(01:02):
I put on my reporter hat and dug into it.
And by reporter hat, I mean a jaunty little fedora
that has a press pass champ hat band. All of
US journalists have one. The history of autism testing kind
of starts with a guy named doctor Bernard Rimland. In
nineteen fifty six, Bernard and his wife Gloria welcome their
(01:24):
first child, Mark to the new dad. His infant son
seemed different from all the other Dodo babies in the nursery.
Baby Mark was wide eyed and precocious looking. Bernie recalled
when Bernie and Gloria got Mark home from the hospital,
they knew something was off. He screamed non stop, sometimes
(01:45):
twelve hours a day, and trying to comfort him only
made it worse. The howling was so constant and so
piercing that the Rimlins neighbors would complain real neighbor lead jerks.
But it wasn't just the endless wailing that gave the
Rimlins pause. As Mark got older, he would also bang
(02:05):
his head against the wall, rock endlessly back and forth
and speaking full sentences but to no one. Once he shouted,
come on, let's play ball out of nowhere, Much to
his parents' surprise, Bernie and Gloria knew this was far
from typical behavior. Together, the harried parents took Mark to
(02:26):
pediatricians and psychotherapists to figure out what was going on,
but none of the professionals had a clue what was wrong.
One of the psychologists they saw repeatedly asked, Bernie, why
do you hate your son? Not helpful. One thing you
(02:51):
need to know about old Bernie Rimland is that he
wasn't just a concerned dad. He was also a psychologist.
Beginning in the nineteen fifties, Bernie served as the director
of research at a naval base in California. He had
a PhD in experimental psychology and an expertise in psychometrics,
or the measurement of mental attributes, behavior and performance. So
(03:15):
it was Bernie's job to devise personnel testing programs for
the Navy. The dude clearly knew his way around data
and analysis, but Bernie's professional pedigree didn't make it any
easier for the Rimlans to get answers about Mark. There
was no Google or YouTube or Facebook back then, no
parents support groups or school based programs, and the doctors
(03:38):
were practically useless. The standard advice at the time for
parents of kids like Mark was to institutionalize them and
basically forget they ever existed. Kids who behave like Mark
were considered demented and labeled as freaks, repulsive, and unworthy
of care. At the suggestion that Bernie institutionalized Mark, he
(03:58):
was like, oh, yeah, no, we're not doing that. He
and Gloria were going to figure this out. They were
going to do with the medical community couldn't or wouldn't
do so. The pair poured through their old psychology textbooks
and finally landed on what they thought was the answer,
Mark was autistic. Because this was the fifties, most doctors
(04:22):
had never heard of autism. It was like autism what autism?
And those who did know what autism was described it
like this, children in a show in a glass ball,
cut off from the world around them. I mean, was
(04:43):
the kiddes snow globe? Why was he in a glass ball?
But this was the way autism, or infantile autism as
it was called then, was talked about in Mark's youth,
if it was talked about at all. Autistic people were afflicted, cursed, possessed,
they had demons, they weren't right. So basically prevailing ideas
(05:05):
about autism at the time were trash. And because there
was hardly any clinical understanding of the condition, many autistic
kids and their parents were left to fend for themselves.
But our pal Bernie figured he could change that. He
was like, why can't I come up with some sort
of standard test for autism. I have all the psych skills,
(05:26):
I'm all about psychometrics, I can do this thing or
something like that. And it's kind of because of this
diy Dad, that I found myself sitting in front of
my computer on a mid November Day, staring down a
half dozen autism tests. You're listening to the Loudest Girl
(05:47):
in the World. Who is not your high school best friend.
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 place a mostly glued
back together person, for better or worse. There's a long
(06:08):
history of parent involvement in autism, but Bernard Rimland might
be the most influential autism parent. Once he and his
wife landed on an autism diagnosis for their son, Bernie
was going to fix him and cure all the other
autistic kids in the process. After nearly a decade of
obsessive research and observation of his son and other kids
(06:30):
like him, Bernie published a book in nineteen sixty four.
It was called Infantile Autism, The Syndrome and Its Implications
for a Neural Theory of behavior. Infantile autism apparently was
a rare and mystifying disorder of obscure ideology and uncertain prognosis.
(06:51):
This is from the nineteen sixty eight educational film Infantile
Autism The Invisible Wall. It is predominantly characterized by self
imposed isolation disinterest in other persons, along with a compulsive
interest in mechanical objects, insistence on the preservation sameless and
(07:12):
highly characteristic language. Behavior. At the back of Bernie's book
was a questionnaire called the Diagnostic Checklist for Behavior Disturbed Children.
The questionnaire, or E one as it came to be known,
revolutionized the assessment and diagnosis of autistic kids. Here's Rimland
explaining his checklist in that same documentary. I myself and
(07:37):
working on an objective diagnostic checklist approach to this problem.
This checklist is capable of picking out cases of infantile autism.
The checklist featured seventy six questions about a kid's behavior
from birth to age seven. Now, to my non scientist brain,
these questions seem I don't know, kind of harsh, definitely
(07:58):
not from the perspective of an actual autistic person, Like
is the child destructive? Did you ever suspect the child
was nearly deaf? Will the child readily accept new sweaters, pajamas, etc.
Does the child say phrases over and over in a hollow,
(08:18):
parrot like or echo like voice to no purpose? And
my favorite, does the child look through or walk through
people as though they weren't there. And the answer to
that is yes, because the child is a ghost. Okay.
So the first standardized tool for assessing autism definitely framed
(08:40):
autism as a problem and autistic kids as troubled. But
at the time it was the only one of its kind.
There were no other resources like it, which is why
Bernie was getting inundated with mail. After the book with
the questionnaire came out, parents desperate for answers were ripping
the questionnaire from the book, filling it out, sending it
(09:01):
to Bernie in the hopes that he would do some
tabulations and let them know what was up with their kid.
They needed to know the why hind their children's atypical behaviors.
Here's some parents from that same educational film. And we
noticed this stiffly. Whenever you try to pick him up.
He never would seem to mold himself to a source,
(09:22):
kind of Richard like. But he chose to write on
the wall, and he wrote, and no amount of schooling
with health. We were the only half in the whole community.
They had his words of the ceiling. He's just like
almost like a little robot or a computer. Things come
in and come out exactly. It was like go in
(09:43):
word for word, yes, because all autistic people are robots.
Even though our buddy Bernie was pissed that people were
tearing pages from his book, he grated every questionnaire and
got back to every parent. Many of them viewed Bernie
as a savior or a saint. He gave them answers
(10:04):
and hope. Sadly, though, Bernard went on to have some
pretty garbage ideas about autistic people. He was of the
school that autistic people need to be fixed or can
be cured, like how some confused people think gay folks
can be turned straight. Burnie also peddled the myth that
(10:24):
vaccines caused autism, which they do not. He supported aversives
like electric cattle prods, and he compared autistic kids to
animals like here in that same documentary. What's interesting about
training autistic cholity as opposed to training animals is that
when you train an animal, he can learn only those
tricks that you've trained, and then nothing more. However, even
(10:46):
though that that hair shown for several improvement have never
to my knowledge, become truly normal, who yish Burnie's ideas
about fixing and Curing did a lot of harm to
autistic kids. Plus he influenced generations of parents into thinking
their autistic kids were deficient instead of just different. But
(11:07):
Bernie was the first to come up with a standardized
evaluative tool for autism, so we got to give him that. Eventually,
the E one checklist gave way to other methods of
evaluating folks for autism. There's no definitive test because, as
I mentioned before, if you know one autistic person, you
know one autistic person. But at least the test today,
(11:30):
like the ones I was prepping to take, aren't asking
is the child cuddly? Or do people consider the child
especially attractive? These tests were important for me as an
adult because I wanted to understand my brain and my
challenges and maybe even my strengths. I wanted a name,
or a framework or a prism through which to view
(11:53):
my own experience, and if I'm honest, I just wanted
to fill in a bunch of circles with my pencil.
Just kidding. The tests are online. After the break, we
get into them, I mean, we really get into them.
(12:20):
As I mentioned in a previous episode, Doctor Natalie Engelbrick,
the Canadian psychotherapist I was working with to get an
evaluation has a two part process, a preliminary assessment and
then a formal screening report. And the preliminary assessment consists
of thirteen questions that require written answers plus six psychometric tests,
(12:44):
also a follow up appointment to go through all the
information with doctor Natalie. Because I am a notorious heel dragger,
I put off taking all the tests. It just seemed
too intimidating. For weeks, I literally had take autism test
on my to do list along with paint bedroom, get
glasses fixed, and buy new blinds for living room. Finally,
(13:07):
on a random Friday, I fired up the old computer
and got to it. All. Right, well, I guess today
is today. I'm gonna do this screening questionnaire. Okay. The
first question was what differences in social interactions do you experience?
(13:30):
Such as emotions, interests, initiating conversations, interrupting, not knowing when
to talk. Oh man, we're getting into it right out
of the gate, no four play or nothing. I feel
little anxious about doing this because I don't think I've
had to write anything about social interactions or relationships or
(13:53):
steaming behavior before. So that's a little bit stressful to
put it down on paper because it's just something I've
never done before. But anxiety or not, I just had
to get on with it. One of the first questions
was do you engage in stereotyped or repetitive motor movements
(14:16):
known as stimming behavior, hand flapping, fidgeting, aligning objects, humming,
repeating phrases, etc. If so, what are your stems? I
was pretty proud of my answer, I wrote, I would
say that I am a casual rocker. When I wait
in line, I tend to rock back and forth. I
also often find that my legs are in motion when
(14:39):
I'm sitting down. If my legs are crossed, I'm always
moving my foot in a circular direction. Also, when I'm
in bed, I am often rubbing my feet together. I
often don't notice it and my girlfriend has to ask
me to stop. But what I really should have written
was yes, I stim by rubbing my fingers back and forth,
over and over and over on a particularly disgusting blanket
(15:00):
that my girlfriend calls linus the jankie blankie, and that
is a source of great shame for me. In fact,
I'm doing it now, even though the repetitive motion and
overtime has caused not only tennis elbow, but also golfer's elbow.
Who knew there was such a thing. The rest of
the questions were equally stressful to answer. What differences in
(15:23):
relationships do you experience? Such as difficulty adjusting behavior two
different social contacts? Making friends? I've had a really hard
time making friends Over the years. As I've aged, I've
gotten better at it. But when I was a kid,
I had no friends. I mean I was friendly with
What are your sensory differences slash challenges? There are certain
textures that just really feel bad, Like I hate the
(15:47):
feeling of my thumb circling the waistband of my underwear
when I'm pulling up my pants. Do you camouflage slash masks?
I'm a woman with a very public job. As you
change your behavior in order to fit in with others
more smoothly, they would laugh in my face because in
fact that has happened. Anything I hate a light time
in my adult relationships. I think I can have a
(16:07):
hard time, and I think those were this makes my skin.
After answering all those questions, I started to feel really bad.
I added this sentence to the bottom of my answer.
(16:29):
Writing this out is making me feel like a freak,
because it was. It made me feel so needy and particular,
and like, why can't you just get over this? This
isn't a pathology, this is just weirdness. But I kept
on writing, and two hours and five single space pages later,
(16:50):
I had a document summing up what I thought were
my challenges. A few days later I started the psychometric tests.
Make it somewhat Oh, come on now, whatever, Sometimes this
nonsense words get into it. Mccarronian the pot boo documenting.
(17:10):
Take screenshots of your answers and results, should make a
morquy section windows. Well, I'm a screenshotting this the process
of the images, name all the files accordingly. This is
unnecessarily complicated, I think. So I have to answer thirteen
(17:36):
questions typed out, and then I have to do one, two, three, four,
five six psychometric tests. Oh god, all right, Oh, I'm
gotta do it first, the AQ or Autism Quotient test.
(17:59):
This tool was developed in two thousand and one by
Sir Simon Baron Cohen, a British clinical psychologist and cousin
to actor Sasha Baron of borat fame. Simon's a bit
of a lightning rod in neurodivergent circles because of his
theory that autistic people see the world through a mail
lens and are mostly interested in things that are stereotypically male,
(18:24):
like trains or computers, or telling people that they're wrong.
Some of the questions seem skewed towards men and boys,
like I usually notice car number plates or similar strings
of information. Definitely agree, slightly agree, slightly disagree, definitely disagree.
(18:45):
I definitely disagree because I am enumerate and numbers give
me hives. Some questions just seemed outdated. I would rather
go to a library than a party, like who's just
hanging out of a library for fun these days? Besides
little children? Over the next few days, I took the
rads R the Aspy Quiz, the Cat Queue RBQ two A,
(19:11):
and the VIA tests and answered questions like have others
told you that you have an odd posture or gait?
And are you often surprised when others tell you that
you have been rude? And do you like tongue kissing?
My answers if you're wondering, were no, yes, and it
depends if the person I'm making out with is a
(19:32):
total babe. Gross. One of these tests really made me nuts.
All I'm saying right now is it. One of these
goddamn tests is making me do math? I mean literally like,
add up these scores in this statement and you know,
carry the one and flip this number around. I'm like,
h No, I didn't sign up for this. Sorry, I
(19:53):
have popcorn in my mouth. I'd rather like, literally not
know what is going on than have to do math.
This is truly bullshit and I didn't sign up for this.
It's literally hurting my brain right now. After a few
(20:15):
days of self examination, I was exhausted. Bernie Rimlin's initial
E one questionnaire was geared towards parents observing their kids,
but here I was trying to assess my own damn self,
and that felt weird and unpleasant. It was not like
taking a Cosmo quiz. But I did it, and then
(20:36):
I sent everything off to doctor Natalie and tried to
put the whole experience out of my mind. Not two
weeks later, I got an email from doctor Natalie. The
subject line read in all caps screening report, but I
didn't open the email. Instead, I texted this to my
girlfriend Hannah. I got an email from the autism doc,
(20:59):
but you said I can't open it without you. It
was a Saturday afternoon when I got the screening report
email and Hannah was out of town for the day.
Hana rope back, No, please don't. If you're desperate, we
can do it tonight by zoom or during the day tomorrow.
I'll come over. So I just had to sit on
(21:19):
my hands and not open the email. The restraint, I
took the dog for a long walk, ordered tie takeout
and binge Season four of The Crown. It felt like
the longest night of my life. The next morning, Hannah
came over to my apartment. Have you like really not
opened this yet? No? Look, look I have not opened this.
(21:40):
Did you not open it because I wasn't here and
I made you not open it? Or did you not
open it because you because it's too big? No, because
you made me not open it. You literally sent me
like nine hundred text messages that were like absolutely, do
not open it in like all caps, like do not
open it. I love you, don't open it. Don't open it.
(22:02):
But now the way it was over all was about
to be revealed? Or was it I'm not sure how
one is supposed to feel when anticipating the results of
an autism screening assessment. I mean, it's not like I
(22:23):
was waiting to hear whether a biopsy found cancer or anything.
Regardless of the results of my screening, nothing fundamental would
change in my life, right I wasn't going to die
or lose my home or get fired from my job.
I mean, mostly because I didn't have one. Still, I
was freaked out. Well, what are you more worried that
(22:43):
it's yes or no? I just want to note that
the dog is sitting snuggling with you right now when
I'm the one who needs comfort like dog, don't you
realize like I'm the one in a situation here, whatever
we're now, I'm just rambling. Should just open it? Why
(23:05):
are you looking at me like that? Because I'm okay,
I'm nervous for you. I'm just nervous for you. It's
like a lot at state. Do you think I need
to have like a game plan of like if yes this,
if no this, like before you open it? Do you
need a game plan? I actually guess I didn't think
(23:27):
about what the scenarios where I'm always somebody who games
out like you're gaming out the logistics, Like, yes, I'm
gaming out the logistics because the logistics are how I
can manage my feelings around this or manage like what
you do. Because if you get a flat out like yeah,
I don't see anything you hear you seem totally typical
and like, you know, everything is fine, then I think
(23:52):
that opens like a real Pandora's box of well, now
what and now what do I do? So let's say
she read everything you wrote, all sort of recollections of
your childhood and just like memories and pain points, and
she's like, yeah, it's just life, Like that's I don't
see any sort of discernible pattern here except like your you.
(24:18):
In what ways does that make you feel good? In
what ways does that make you feel bad? I think
it actually feels bad because I feel like there's this
collection of challenges and if they're not all talking to
each other and they're all these sort of discreet issues,
then it's like it just makes it harder to think
(24:38):
of how to adjust to them or how to reconcile
with the ways that they have impacted my life. I
think that being able to have word for something other
people will give you the word. The word is usually
like difficult, or the word is, you know, a pain
(25:00):
in the ass, or the word is picky, or there's
like a whole bunch of words that people will give
you and rigid, intractable, like in flat ball, and so
it's it's nice to have a word that you can
give back and be like, actually, I'm autistic. So that's
that's the problem with it being a no. It's like
(25:20):
you don't get the relief of having a word that
can kind of like clear out the other words. At
this point, I think we're just stalling here, but Hannah
is trying to keep us on task. What if it's
a yes? Oh what if it's a yes? I don't know.
I don't actually don't know. I mean, I feel like
a little bit choked up even thinking about that. I'm sorry,
(25:41):
I'm distracted by my dog who is nuzzling even further
into your lap. Okay, but I mean, how I'll feel,
I have no idea. I don't know how to anticipate that.
I mean, we've been talking about it for so long,
and I really, I honestly don't know. So we're gonna
open this, but first, just name a couple of things
you might feel if it's a yes, this is a
lightning round, Lauren, you are officially diagnosed as autistic. That
(26:06):
I don't want to do that really anxiety like fear
right now you just answered them. You did it, A
little bit of relief, some anxiety like do I want
to tell anybody? Some shame, but also some like elation
because it's nice to have an identity, like what are
all the things? I mean, you just named all of them,
(26:27):
and that actually is very helpful, so I don't have
to do it, Okay, I actually feel like a little
bit sick about doing this actually, like A don't Yeah,
I don't think I can actually open it, can I?
(26:59):
I mean, maybe it wasn't like I didn't. Maybe it
wasn't that hard for me to not open it last
night because I didn't. I didn't really want to open it.
I didn't actually think I would feel like bad. I
(27:23):
really didn't like I thought it would just like open
the email, read it. It's fine, It's like no big deal,
Like it's like not fine. I think I probably have
to open it myself though, don't. I M fuck, where's
(27:50):
my autism support dog? I got it together enough to
click on the email. Oh what use this link to
download your screening assessment document? Oh god, what, I can't
read all the words? Just click huh, just click it.
(28:14):
I can't just put in an email because then, like
people will see it had to downlook what I've literally thought.
I would just open an email and it would just
be like budding. It would be a big yes, it
would just say you're autistic. Oh what? Oh what is this?
(28:38):
Who uses pages? I opened the attachment and I just
couldn't figure it out. It was a total word salad
to me, Like what was I even reading? Oh? My
fucking god, are you kidding me? It's like nine hundred
pages long. That's only one thing that you need to
read For now. I don't see anything. Look again, You've
(29:52):
been listening to The Loudest Girl in the World. It's hosted, written,
end executive produced by me Lauren Obert. Our senior producer
is writer. Also our associate producer is David John. Sophie
Crane is our showrunner and senior editor. Jake Gorski is
our mix engineer. Music composed by my autistic Kiwee Pale
the Inimitable Lady Hawk. Our artwork was created by the
(30:15):
autistic illustrator Loretta Ipsum. The show was fact checked by
Andrea Lopez Cruzado, and our autism consultant is Sarah Cappett.
Our executive producers are Mia Lobell and Leta Mullad. A
(30:35):
lot of the research in this episode came from Steve
Silberman's book NeuroTribes The Legacy of Autism in the Future
of Neurodiversity, as well as the book In a Different Key,
The Story of Autism by John don Van and Karen Zucker.
John and Karen also hosts a podcast called Autism's First Child,
(30:56):
so check that out. Thanks for listening, friends,
Pushkin. A little content warning. We get into some pretty
troubling descriptions of autism from back in the day in
this episode, plus some deluxe feelings and some tears, so
keep that in mind when listening. Okay, onwards. I'm a
(00:40):
person who wants to know all the answers. It drove
my parents' nuts when I was a kid. I just
wanted to know everything, and this autism evaluation process was
no different. I didn't just want to blindly take a
bunch of tests and spill my guts out to a therapist.
I wanted to understand the legacy of autism diagnostics. So
(01:02):
I put on my reporter hat and dug into it.
And by reporter hat, I mean a jaunty little fedora
that has a press pass champ hat band. All of
US journalists have one. The history of autism testing kind
of starts with a guy named doctor Bernard Rimland. In
nineteen fifty six, Bernard and his wife Gloria welcome their
(01:24):
first child, Mark to the new dad. His infant son
seemed different from all the other Dodo babies in the nursery.
Baby Mark was wide eyed and precocious looking. Bernie recalled
when Bernie and Gloria got Mark home from the hospital,
they knew something was off. He screamed non stop, sometimes
(01:45):
twelve hours a day, and trying to comfort him only
made it worse. The howling was so constant and so
piercing that the Rimlins neighbors would complain real neighbor lead jerks.
But it wasn't just the endless wailing that gave the
Rimlins pause. As Mark got older, he would also bang
(02:05):
his head against the wall, rock endlessly back and forth
and speaking full sentences but to no one. Once he shouted,
come on, let's play ball out of nowhere, Much to
his parents' surprise, Bernie and Gloria knew this was far
from typical behavior. Together, the harried parents took Mark to
(02:26):
pediatricians and psychotherapists to figure out what was going on,
but none of the professionals had a clue what was wrong.
One of the psychologists they saw repeatedly asked, Bernie, why
do you hate your son? Not helpful. One thing you
(02:51):
need to know about old Bernie Rimland is that he
wasn't just a concerned dad. He was also a psychologist.
Beginning in the nineteen fifties, Bernie served as the director
of research at a naval base in California. He had
a PhD in experimental psychology and an expertise in psychometrics,
or the measurement of mental attributes, behavior and performance. So
(03:15):
it was Bernie's job to devise personnel testing programs for
the Navy. The dude clearly knew his way around data
and analysis, but Bernie's professional pedigree didn't make it any
easier for the Rimlans to get answers about Mark. There
was no Google or YouTube or Facebook back then, no
parents support groups or school based programs, and the doctors
(03:38):
were practically useless. The standard advice at the time for
parents of kids like Mark was to institutionalize them and
basically forget they ever existed. Kids who behave like Mark
were considered demented and labeled as freaks, repulsive, and unworthy
of care. At the suggestion that Bernie institutionalized Mark, he
(03:58):
was like, oh, yeah, no, we're not doing that. He
and Gloria were going to figure this out. They were
going to do with the medical community couldn't or wouldn't
do so. The pair poured through their old psychology textbooks
and finally landed on what they thought was the answer,
Mark was autistic. Because this was the fifties, most doctors
(04:22):
had never heard of autism. It was like autism what autism?
And those who did know what autism was described it
like this, children in a show in a glass ball,
cut off from the world around them. I mean, was
(04:43):
the kiddes snow globe? Why was he in a glass ball?
But this was the way autism, or infantile autism as
it was called then, was talked about in Mark's youth,
if it was talked about at all. Autistic people were afflicted, cursed, possessed,
they had demons, they weren't right. So basically prevailing ideas
(05:05):
about autism at the time were trash. And because there
was hardly any clinical understanding of the condition, many autistic
kids and their parents were left to fend for themselves.
But our pal Bernie figured he could change that. He
was like, why can't I come up with some sort
of standard test for autism. I have all the psych skills,
(05:26):
I'm all about psychometrics, I can do this thing or
something like that. And it's kind of because of this
diy Dad, that I found myself sitting in front of
my computer on a mid November Day, staring down a
half dozen autism tests. You're listening to the Loudest Girl
(05:47):
in the World. Who is not your high school best friend.
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 place a mostly glued
back together person, for better or worse. There's a long
(06:08):
history of parent involvement in autism, but Bernard Rimland might
be the most influential autism parent. Once he and his
wife landed on an autism diagnosis for their son, Bernie
was going to fix him and cure all the other
autistic kids in the process. After nearly a decade of
obsessive research and observation of his son and other kids
(06:30):
like him, Bernie published a book in nineteen sixty four.
It was called Infantile Autism, The Syndrome and Its Implications
for a Neural Theory of behavior. Infantile autism apparently was
a rare and mystifying disorder of obscure ideology and uncertain prognosis.
(06:51):
This is from the nineteen sixty eight educational film Infantile
Autism The Invisible Wall. It is predominantly characterized by self
imposed isolation disinterest in other persons, along with a compulsive
interest in mechanical objects, insistence on the preservation sameless and
(07:12):
highly characteristic language. Behavior. At the back of Bernie's book
was a questionnaire called the Diagnostic Checklist for Behavior Disturbed Children.
The questionnaire, or E one as it came to be known,
revolutionized the assessment and diagnosis of autistic kids. Here's Rimland
explaining his checklist in that same documentary. I myself and
(07:37):
working on an objective diagnostic checklist approach to this problem.
This checklist is capable of picking out cases of infantile autism.
The checklist featured seventy six questions about a kid's behavior
from birth to age seven. Now, to my non scientist brain,
these questions seem I don't know, kind of harsh, definitely
(07:58):
not from the perspective of an actual autistic person, Like
is the child destructive? Did you ever suspect the child
was nearly deaf? Will the child readily accept new sweaters, pajamas, etc.
Does the child say phrases over and over in a hollow,
(08:18):
parrot like or echo like voice to no purpose? And
my favorite, does the child look through or walk through
people as though they weren't there. And the answer to
that is yes, because the child is a ghost. Okay.
So the first standardized tool for assessing autism definitely framed
(08:40):
autism as a problem and autistic kids as troubled. But
at the time it was the only one of its kind.
There were no other resources like it, which is why
Bernie was getting inundated with mail. After the book with
the questionnaire came out, parents desperate for answers were ripping
the questionnaire from the book, filling it out, sending it
(09:01):
to Bernie in the hopes that he would do some
tabulations and let them know what was up with their kid.
They needed to know the why hind their children's atypical behaviors.
Here's some parents from that same educational film. And we
noticed this stiffly. Whenever you try to pick him up.
He never would seem to mold himself to a source,
(09:22):
kind of Richard like. But he chose to write on
the wall, and he wrote, and no amount of schooling
with health. We were the only half in the whole community.
They had his words of the ceiling. He's just like
almost like a little robot or a computer. Things come
in and come out exactly. It was like go in
(09:43):
word for word, yes, because all autistic people are robots.
Even though our buddy Bernie was pissed that people were
tearing pages from his book, he grated every questionnaire and
got back to every parent. Many of them viewed Bernie
as a savior or a saint. He gave them answers
(10:04):
and hope. Sadly, though, Bernard went on to have some
pretty garbage ideas about autistic people. He was of the
school that autistic people need to be fixed or can
be cured, like how some confused people think gay folks
can be turned straight. Burnie also peddled the myth that
(10:24):
vaccines caused autism, which they do not. He supported aversives
like electric cattle prods, and he compared autistic kids to
animals like here in that same documentary. What's interesting about
training autistic cholity as opposed to training animals is that
when you train an animal, he can learn only those
tricks that you've trained, and then nothing more. However, even
(10:46):
though that that hair shown for several improvement have never
to my knowledge, become truly normal, who yish Burnie's ideas
about fixing and Curing did a lot of harm to
autistic kids. Plus he influenced generations of parents into thinking
their autistic kids were deficient instead of just different. But
(11:07):
Bernie was the first to come up with a standardized
evaluative tool for autism, so we got to give him that. Eventually,
the E one checklist gave way to other methods of
evaluating folks for autism. There's no definitive test because, as
I mentioned before, if you know one autistic person, you
know one autistic person. But at least the test today,
(11:30):
like the ones I was prepping to take, aren't asking
is the child cuddly? Or do people consider the child
especially attractive? These tests were important for me as an
adult because I wanted to understand my brain and my
challenges and maybe even my strengths. I wanted a name,
or a framework or a prism through which to view
(11:53):
my own experience, and if I'm honest, I just wanted
to fill in a bunch of circles with my pencil.
Just kidding. The tests are online. After the break, we
get into them, I mean, we really get into them.
(12:20):
As I mentioned in a previous episode, Doctor Natalie Engelbrick,
the Canadian psychotherapist I was working with to get an
evaluation has a two part process, a preliminary assessment and
then a formal screening report. And the preliminary assessment consists
of thirteen questions that require written answers plus six psychometric tests,
(12:44):
also a follow up appointment to go through all the
information with doctor Natalie. Because I am a notorious heel dragger,
I put off taking all the tests. It just seemed
too intimidating. For weeks, I literally had take autism test
on my to do list along with paint bedroom, get
glasses fixed, and buy new blinds for living room. Finally,
(13:07):
on a random Friday, I fired up the old computer
and got to it. All. Right, well, I guess today
is today. I'm gonna do this screening questionnaire. Okay. The
first question was what differences in social interactions do you experience?
(13:30):
Such as emotions, interests, initiating conversations, interrupting, not knowing when
to talk. Oh man, we're getting into it right out
of the gate, no four play or nothing. I feel
little anxious about doing this because I don't think I've
had to write anything about social interactions or relationships or
(13:53):
steaming behavior before. So that's a little bit stressful to
put it down on paper because it's just something I've
never done before. But anxiety or not, I just had
to get on with it. One of the first questions
was do you engage in stereotyped or repetitive motor movements
(14:16):
known as stimming behavior, hand flapping, fidgeting, aligning objects, humming,
repeating phrases, etc. If so, what are your stems? I
was pretty proud of my answer, I wrote, I would
say that I am a casual rocker. When I wait
in line, I tend to rock back and forth. I
also often find that my legs are in motion when
(14:39):
I'm sitting down. If my legs are crossed, I'm always
moving my foot in a circular direction. Also, when I'm
in bed, I am often rubbing my feet together. I
often don't notice it and my girlfriend has to ask
me to stop. But what I really should have written
was yes, I stim by rubbing my fingers back and forth,
over and over and over on a particularly disgusting blanket
(15:00):
that my girlfriend calls linus the jankie blankie, and that
is a source of great shame for me. In fact,
I'm doing it now, even though the repetitive motion and
overtime has caused not only tennis elbow, but also golfer's elbow.
Who knew there was such a thing. The rest of
the questions were equally stressful to answer. What differences in
(15:23):
relationships do you experience? Such as difficulty adjusting behavior two
different social contacts? Making friends? I've had a really hard
time making friends Over the years. As I've aged, I've
gotten better at it. But when I was a kid,
I had no friends. I mean I was friendly with
What are your sensory differences slash challenges? There are certain
textures that just really feel bad, Like I hate the
(15:47):
feeling of my thumb circling the waistband of my underwear
when I'm pulling up my pants. Do you camouflage slash masks?
I'm a woman with a very public job. As you
change your behavior in order to fit in with others
more smoothly, they would laugh in my face because in
fact that has happened. Anything I hate a light time
in my adult relationships. I think I can have a
(16:07):
hard time, and I think those were this makes my skin.
After answering all those questions, I started to feel really bad.
I added this sentence to the bottom of my answer.
(16:29):
Writing this out is making me feel like a freak,
because it was. It made me feel so needy and particular,
and like, why can't you just get over this? This
isn't a pathology, this is just weirdness. But I kept
on writing, and two hours and five single space pages later,
(16:50):
I had a document summing up what I thought were
my challenges. A few days later I started the psychometric tests.
Make it somewhat Oh, come on now, whatever, Sometimes this
nonsense words get into it. Mccarronian the pot boo documenting.
(17:10):
Take screenshots of your answers and results, should make a
morquy section windows. Well, I'm a screenshotting this the process
of the images, name all the files accordingly. This is
unnecessarily complicated, I think. So I have to answer thirteen
(17:36):
questions typed out, and then I have to do one, two, three, four,
five six psychometric tests. Oh god, all right, Oh, I'm
gotta do it first, the AQ or Autism Quotient test.
(17:59):
This tool was developed in two thousand and one by
Sir Simon Baron Cohen, a British clinical psychologist and cousin
to actor Sasha Baron of borat fame. Simon's a bit
of a lightning rod in neurodivergent circles because of his
theory that autistic people see the world through a mail
lens and are mostly interested in things that are stereotypically male,
(18:24):
like trains or computers, or telling people that they're wrong.
Some of the questions seem skewed towards men and boys,
like I usually notice car number plates or similar strings
of information. Definitely agree, slightly agree, slightly disagree, definitely disagree.
(18:45):
I definitely disagree because I am enumerate and numbers give
me hives. Some questions just seemed outdated. I would rather
go to a library than a party, like who's just
hanging out of a library for fun these days? Besides
little children? Over the next few days, I took the
rads R the Aspy Quiz, the Cat Queue RBQ two A,
(19:11):
and the VIA tests and answered questions like have others
told you that you have an odd posture or gait?
And are you often surprised when others tell you that
you have been rude? And do you like tongue kissing?
My answers if you're wondering, were no, yes, and it
depends if the person I'm making out with is a
(19:32):
total babe. Gross. One of these tests really made me nuts.
All I'm saying right now is it. One of these
goddamn tests is making me do math? I mean literally like,
add up these scores in this statement and you know,
carry the one and flip this number around. I'm like,
h No, I didn't sign up for this. Sorry, I
(19:53):
have popcorn in my mouth. I'd rather like, literally not
know what is going on than have to do math.
This is truly bullshit and I didn't sign up for this.
It's literally hurting my brain right now. After a few
(20:15):
days of self examination, I was exhausted. Bernie Rimlin's initial
E one questionnaire was geared towards parents observing their kids,
but here I was trying to assess my own damn self,
and that felt weird and unpleasant. It was not like
taking a Cosmo quiz. But I did it, and then
(20:36):
I sent everything off to doctor Natalie and tried to
put the whole experience out of my mind. Not two
weeks later, I got an email from doctor Natalie. The
subject line read in all caps screening report, but I
didn't open the email. Instead, I texted this to my
girlfriend Hannah. I got an email from the autism doc,
(20:59):
but you said I can't open it without you. It
was a Saturday afternoon when I got the screening report
email and Hannah was out of town for the day.
Hana rope back, No, please don't. If you're desperate, we
can do it tonight by zoom or during the day tomorrow.
I'll come over. So I just had to sit on
(21:19):
my hands and not open the email. The restraint, I
took the dog for a long walk, ordered tie takeout
and binge Season four of The Crown. It felt like
the longest night of my life. The next morning, Hannah
came over to my apartment. Have you like really not
opened this yet? No? Look, look I have not opened this.
(21:40):
Did you not open it because I wasn't here and
I made you not open it? Or did you not
open it because you because it's too big? No, because
you made me not open it. You literally sent me
like nine hundred text messages that were like absolutely, do
not open it in like all caps, like do not
open it. I love you, don't open it. Don't open it.
(22:02):
But now the way it was over all was about
to be revealed? Or was it I'm not sure how
one is supposed to feel when anticipating the results of
an autism screening assessment. I mean, it's not like I
(22:23):
was waiting to hear whether a biopsy found cancer or anything.
Regardless of the results of my screening, nothing fundamental would
change in my life, right I wasn't going to die
or lose my home or get fired from my job.
I mean, mostly because I didn't have one. Still, I
was freaked out. Well, what are you more worried that
(22:43):
it's yes or no? I just want to note that
the dog is sitting snuggling with you right now when
I'm the one who needs comfort like dog, don't you
realize like I'm the one in a situation here, whatever
we're now, I'm just rambling. Should just open it? Why
(23:05):
are you looking at me like that? Because I'm okay,
I'm nervous for you. I'm just nervous for you. It's
like a lot at state. Do you think I need
to have like a game plan of like if yes this,
if no this, like before you open it? Do you
need a game plan? I actually guess I didn't think
(23:27):
about what the scenarios where I'm always somebody who games
out like you're gaming out the logistics, Like, yes, I'm
gaming out the logistics because the logistics are how I
can manage my feelings around this or manage like what
you do. Because if you get a flat out like yeah,
I don't see anything you hear you seem totally typical
and like, you know, everything is fine, then I think
(23:52):
that opens like a real Pandora's box of well, now
what and now what do I do? So let's say
she read everything you wrote, all sort of recollections of
your childhood and just like memories and pain points, and
she's like, yeah, it's just life, Like that's I don't
see any sort of discernible pattern here except like your you.
(24:18):
In what ways does that make you feel good? In
what ways does that make you feel bad? I think
it actually feels bad because I feel like there's this
collection of challenges and if they're not all talking to
each other and they're all these sort of discreet issues,
then it's like it just makes it harder to think
(24:38):
of how to adjust to them or how to reconcile
with the ways that they have impacted my life. I
think that being able to have word for something other
people will give you the word. The word is usually
like difficult, or the word is, you know, a pain
(25:00):
in the ass, or the word is picky, or there's
like a whole bunch of words that people will give
you and rigid, intractable, like in flat ball, and so
it's it's nice to have a word that you can
give back and be like, actually, I'm autistic. So that's
that's the problem with it being a no. It's like
(25:20):
you don't get the relief of having a word that
can kind of like clear out the other words. At
this point, I think we're just stalling here, but Hannah
is trying to keep us on task. What if it's
a yes? Oh what if it's a yes? I don't know.
I don't actually don't know. I mean, I feel like
a little bit choked up even thinking about that. I'm sorry,
(25:41):
I'm distracted by my dog who is nuzzling even further
into your lap. Okay, but I mean, how I'll feel,
I have no idea. I don't know how to anticipate that.
I mean, we've been talking about it for so long,
and I really, I honestly don't know. So we're gonna
open this, but first, just name a couple of things
you might feel if it's a yes, this is a
lightning round, Lauren, you are officially diagnosed as autistic. That
(26:06):
I don't want to do that really anxiety like fear
right now you just answered them. You did it, A
little bit of relief, some anxiety like do I want
to tell anybody? Some shame, but also some like elation
because it's nice to have an identity, like what are
all the things? I mean, you just named all of them,
(26:27):
and that actually is very helpful, so I don't have
to do it, Okay, I actually feel like a little
bit sick about doing this actually, like A don't Yeah,
I don't think I can actually open it, can I?
(26:59):
I mean, maybe it wasn't like I didn't. Maybe it
wasn't that hard for me to not open it last
night because I didn't. I didn't really want to open it.
I didn't actually think I would feel like bad. I
(27:23):
really didn't like I thought it would just like open
the email, read it. It's fine, It's like no big deal,
Like it's like not fine. I think I probably have
to open it myself though, don't. I M fuck, where's
(27:50):
my autism support dog? I got it together enough to
click on the email. Oh what use this link to
download your screening assessment document? Oh god, what, I can't
read all the words? Just click huh, just click it.
(28:14):
I can't just put in an email because then, like
people will see it had to downlook what I've literally thought.
I would just open an email and it would just
be like budding. It would be a big yes, it
would just say you're autistic. Oh what? Oh what is this?
(28:38):
Who uses pages? I opened the attachment and I just
couldn't figure it out. It was a total word salad
to me, Like what was I even reading? Oh? My
fucking god, are you kidding me? It's like nine hundred
pages long. That's only one thing that you need to
read For now. I don't see anything. Look again, You've
(29:52):
been listening to The Loudest Girl in the World. It's hosted, written,
end executive produced by me Lauren Obert. Our senior producer
is writer. Also our associate producer is David John. Sophie
Crane is our showrunner and senior editor. Jake Gorski is
our mix engineer. Music composed by my autistic Kiwee Pale
the Inimitable Lady Hawk. Our artwork was created by the
(30:15):
autistic illustrator Loretta Ipsum. The show was fact checked by
Andrea Lopez Cruzado, and our autism consultant is Sarah Cappett.
Our executive producers are Mia Lobell and Leta Mullad. A
(30:35):
lot of the research in this episode came from Steve
Silberman's book NeuroTribes The Legacy of Autism in the Future
of Neurodiversity, as well as the book In a Different Key,
The Story of Autism by John don Van and Karen Zucker.
John and Karen also hosts a podcast called Autism's First Child,
(30:56):
so check that out. Thanks for listening, friends,
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