Episode Transcript
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Speaker 1 (00:02):
I'm Talia Shlanger and you're listening to here's the thing
from my heart radio. The netflix show love on the
spectrum is a reality dating series, but it is totally
different than anything you might have come to expect from
the crowded and, let's be honest, often staged world of
reality dating shows. The series is full of heart and
(00:22):
promise and it features people who don't often get the spotlight.
My name is Kaylin, I'm twenty four years old and
I'm single and I'm looking for a boyfriend. Why do
you want to find them? I don't want to die alone.
Being around people is straining, but I don't like being alone.
I like to be with my friends, I like to
be with my family. I don't like to be really alone,
(00:46):
just day to day. So I think having love, having
a boyfriend, would really be helpful. I basically have every
learning disability you could have, um dyslexia, dyscalcula, dysgraphy, a
D H D and autism. It makes a lot of
the different aspects of my life challenging. That's Kaylin partlow,
(01:08):
one of the participants, in a clip from the show.
The subjects looking for love are all on different parts
of the autism spectrum and throughout the series you see
them navigate the pressures, struggles and successes of dating life
through Swiping, speed dating and, yes, even ghosting. There are
already two seasons of the original Australian version of love
(01:29):
on the spectrum. The American version premiered earlier this year.
Just this month it won three Emmy Awards, including best
unstructured reality series. Coming up I'll talk with the show's
relationship expert, Jennifer Cook, who is herself on the spectrum,
but first I spoke with Creator, producer and director Keyan o'clary,
(01:50):
and participant Kalin partlow, who is also an autism therapist
and advocate. I was curious about how partlow felt this
series compared with the traditional portrayals of autism we've seen
in the media. Yeah, I think it's been pretty consistent
in terms of portrayal. In the media we see a
lot of genius stereotypes, people with incredibly high I Q s,
(02:14):
people who are classified as savants, and they're usually men
and that's just not the reality. For their the vast
majority of people on the spectrum, we on average, do
not have genius level. I use it but yeah, in
the media they portray autism as somebody who is a savant,
who is a genius, who has these special abilities above
other people, and that's just not the reality that most
(02:36):
of us face. Klin, I know you answer this question
in the show, but for our purposes here and for
people who haven't watched love on the spectrum yet, do
you mind answering it again? What does autism mean for you?
For me it means I've always kind of been a loner,
and not by choice. It's always been kind of difficult
to connect to people um and kind of form those
(02:58):
relationships and then maintain those relationships. I think when I
was younger I was missing a lot of those skills
and now, as an adult, I'm missing a lot of opportunities. Sometimes. Um,
it also means sensory sensitivities and a lot of routines. Yeah,
so when you first heard about this show, love on
the spectrum, and the idea that it would be a
spectrum of people with a range of presentations of autism,
(03:23):
what was your reaction to the idea of this show? Well,
I loved the Australian version. I love both seasons. I
loved the diversity that they tried to accumulate for everybody
in the series and even the amount of like orientations
that they had. Not Everybody was straight, and I thought
that was really important. Yeah, for sure. And Kian, I
(03:45):
want to know you. You've said that after doing two
seasons of the show in Australia, you've said that it
was important for you to bring the show to the US.
Why is that? Well, look, it was just a great
opportunity to make a show that we'll potentially reach and
even to audience, you know, a bigger audience. So it
was just a great opportunity to keep exploring that, the
diversity of the spectrum, but not just reaching a water
(04:08):
audience but exploring even further. You know, everybody is so different.
We're not fictionalizing anything, we're not over dramatizing things, we're
not editing things to look at a certain way. So
it's just a great way for people to get to
know people and hopefully to have some fun in the
process and enjoy the experience of, you know, watching their
stories unfauld. You know, we also get messages from people
(04:28):
on the spectrum themselves, families, people, just saying what a
difference it's made to them. and to their lives, which
is great. So it's just great to be able to
have this platform. When people see a story of someone
like Kalin. You know, she was so important to include
because Kalin presents in a way that people are very
surprised that she's on the spectrum, and that's really important
(04:50):
because it's that invisible thing, you know. Yeah, I think
people tend to equate high functioning artism to easy artism,
and it's not that it might be easier for those
around me, but it doesn't necessarily mean that my experience
is easy. I have a lot of language and so
it can kind of throw people off to learn that
I have a disability that can impact my communication just
(05:10):
because my expressive language is so good. But that doesn't
account for the social anxiety that I'm feeling and it
doesn't certainly account for the isolation that I've experienced as
a result of having a brain that is wired differently.
Is there a term that you prefer to high functioning
that you like people to use? Sometimes, if you're trying
to describe somebody, as you know this person is autistic,
(05:33):
rather than using higher low functioning as descriptors, you might
say instead they're autistic their language abled, or they're autistic
and they have language deficits or language impairments or language difficulties,
which is kind of a mouthful, but it might give
you a better idea of the person that they're talking about.
Key and I was very curious about how you went
about finding blind dates for people or deciding, deciding whether
(05:57):
even to draw on the neurodivergent or her atypical communities
when you're setting up individual participants. Maybe you can see
a bit more about that. Yeah, well, I guess the
one element of the series that is, I guess, or constructed,
or the one element of the series that we do
as producers, kind of create, is that we find matches
for people, and that's mainly because if we were just
(06:19):
following someone on their dating journey, not a lot might
happen in some cases, for example so so bod who
had never been on a date in his entire life.
So he was kind of really hoping we could help
him with that. His family were hoping we could really
help him with that. So I guess in terms of
how we look for people and how we find people,
it's very different depending on the person. So it's all
(06:40):
about getting to know people really well. And then we
have our production team and as producers we kind of
actors matchmakers as best we can. The main thing we
try and do is match people that we think will
at least have something in common get along. Even if
something romantic doesn't happen, they might find a friend. That's
(07:01):
kind of what we hope for. And Yeah, we we
find people in old different sorts of ways, again, depending
on who the person is. That way trying to match. Calin,
still hoping to find someone, but you know, there's always time. Calin,
you've had a lot of interest since the show, I believe. Yeah,
I have had a lot. I can't say that that
interest has always been reciprocated, but there has been quite
(07:24):
a bit of interest. Bet So, there was quite a
different technique for you. We saw you go to a
speed dating event to meet potential dates. Can you talk
me through that? What was that experience like for you? Well,
I had never been speed dating before, so I wasn't
sure what to expect, but once I started I realized
how efficient it was in terms of time. Um, you
(07:46):
kind of get to know people very quickly and so
maybe you don't know everything about them, but you know
at the very least if you're interested in seeing them again,
and so I thought that was a really efficient way
to date and honestly, more people should try it. We also,
I mean we also saw you do some advent chers
in online dating. Can you speak a little bit about
what that experience is like? Online dating? Online dating has
(08:06):
not been fruitful and I don't know that it will
be even given time. It's been a couple of years
now and it's just not gone very well. And I
couldn't tell you why, I because I'm sure there are
plenty of Nice guys out there. It's just finding them
and connecting with them is the hard part. Yes, you
were quite funny and talking on the series about a
particular trend that you noticed in many men's photos, and
(08:28):
I think anybody who's listening who's done online dating can
relate to this. The dead animals, and particularly the dead fish.
Every time, and you know I said it, somebody asked
me this the other day. I said, you know, maybe
this might be a little gross, but is the fish
meant to be like a euphemism for something? Is it's
supposed to represent something? Because there's just so many people
(08:51):
who are holding up the fish. There's got to be
some significance either that or my other thought was, is
it that they're showing that they are a good provider,
because we go to the grocery store? So that's great,
but it's not very necessary. That would definitely be a
more appealing photo full grocery cart. And Look, I think shop.
(09:13):
That's fantastic. That's a life skill. Lots of people don't
know how to do that, but I'm not particularly impressed
by fishing. So, Caitlin, I know you answered this question
on the show, but I'm going to ask it to
you because I think it sets up a good context
for the way that we're talking about this. What does
autism mean for you in a dating context? I think
for dating it means that I'm more careful and maybe
(09:35):
picky or choosy about who I am spending time with.
Um I've had a couple experiences where I've allocated my
time towards somebody only to find out that they're not
somebody who is compassionate to people with disabilities, even before
finding out that I am a person with a disability
and that's really important to me. So me aside if
they cannot have compassion or understanding for other people, disabled
(09:57):
or otherwise. That's not somebody I'm gonna want to spend
my time with. So it's made me more picky, I think,
in that regard, and it's also kind of harder to
relate and to connect to people just because my hobbies
and interests have never been what's been considered typical or
normal Um, and even if they were something that was
typical or normal, they would be more intense than what
would be normally expected of somebody. So that can make
(10:18):
it harder to connect with other people. That's really interesting
that there would be a period of time where you
get to know somebody's general attitudes towards people with maybe
neuro divergence without even knowing that the person that they're
on a date with, who is you, is part of
that community. How do you decide when to share that
part of yourself with somebody that you're getting to know?
(10:42):
I think I've had the, you know, the experience of
being on the show and it has made me more
confident in disclosing that information to people and not being
afraid just because I think I know how to handle it.
Now I've come into so much contact with success that
I'm able to do it and not feel so nervous
about it. But otherwise I would say that I don't
usually lead with that information. I try to get to
(11:04):
know them first and if it's relevant to the conversation
or if I think it will be useful for some reason,
then I'll share that, but usually I'll wait until I
get a little bit closer to them. Yeah, Kien, can
you tell me a bit about your approach as a
filmmaker to capture these really intimate moments but also, I guess,
not be in the way of what was unfolding? MHMM. Yeah,
(11:25):
so the way I like to work we just try
to have a really small footprints and I think that
just really helps to, I guess, make people feel comfortable
and for people to sometimes forget the way around and
to be able to capture things that are really truthful
and honest. When my filming dates, we we try and
hang quite far back and use longer lenses, so we're
(11:46):
just trying to be as low impact as possible and
I think that helps to tell those stories in a
in a way that feels real. Kalen, I've seen some
of your social media and that people have commented publicly
on your post to tell you how much your participation
means to them. Can you say a little bit about
what the reaction has been like for you in particular?
(12:09):
I kind of knew that it was gonna be I
would gain some followers and people would message, but I
never could have predicted the amount of people who are
so impressed and so inspired by it. Um and, more importantly,
the people that relate to me. I kind of thought
I was an outlier in terms of just where my
specific deficits are in terms of relating to autism and
(12:30):
the things that I struggle with. I kind of thought
I was a bit unusual. You know, I've seen bits
and pieces of myself in other autistic people around me,
but I've never met somebody who was truly like me,
if that makes sense, especially in an adult. And so
seeing that on social media, getting messages from other autistic
women saying I relate to you for all these reasons
(12:50):
and giving all the specific information that they have in
common with me after seeing my story. I don't even
know the word for it, flabbercacid, surprise, Um, incurridge, all
of those. You know, it's been wonderful. It's got to
be pretty cool. I mean it's amazing. What were you
hoping would happen when you participated in the show in
the first place in terms of how autism is represented
(13:12):
on screen? I was hoping, kind of like keyns talked
about before, to bring some awareness to just the different
parts of the spectrum and how it can show up
differently for different people. That aside, I was kind of
just expecting to have a fun you know, I've never
experienced anything like this. Most people probably haven't experienced anything
like this, and so I was just hoping for kind
of a new experience, to do something fun Um, and
(13:33):
it's met and exceeded my expectations. From love on the spectrum.
That's director Kian o'clary and participant Kalin partlow. If you
love conversations about real people's stories, check out our episode
with documentary filmmaker Ken Burns. I would just suggest, too,
(13:54):
that these big themes, these big stories, the constituent building blocks,
are these intimate, bottom up stories, more often than not,
of people that you don't know, and so, like William Blake,
we're finding the world in a grain of sand and
that changes, particularizes, literally atomizes, the way you tell these stories.
So it isn't just the thirty thousand feet great man
(14:17):
history of the presidency in generals and wars. It's something
that is bottom up and you and you touch on
the African American experience, which is in almost every film
we've made. And when you learn from so called ordinary people,
then it sort of mitigates the tension of the big idea.
Here the rest of the conversation with Ken Burns at.
Here's the thing, dot org, when we return, autism advocate
(14:41):
Calin partlow shares what she feels is most misunderstood about
the spectrum. I'm Talia S Langer and you're listening to
(15:02):
here's the thing. Director Kiano' CLARY had made two seasons
of the series. When he set out to film the
US version of love on the spectrum, I wondered if
he ever felt pressure about the show's portrayal of the
artistic community. Yeah, there is a sense of like a
weight of responsibility that these stories are, you know, probably
(15:23):
one of the biggest representations of autism now in the media. So,
given they are real people's stories, that's kind of the
most comforting thing for me, is that you know these
are we're just we're trying to give voice to people,
to tell their own stories as much as we can,
which is why we have those muster interviews where people
are looking down the barrel. It looks like they're looking
straight at the audience. They're looking at me through a
(15:45):
mirror thing, just things like that that just helped to
feel like we're giving people a voice rather than trying
to present people. Kaalen. Do you feel that public views
are changing or evolving about our atism? I think so.
I think some countries are doing really well, in some
countries are not quite caught up in terms of accurate
(16:06):
information or information at all, and so I think in
some places and in some aspects we're doing really well
in terms of autism awareness, and in some places and
some aspects there's lots of work to be done. What
do you wish that more people understood about autism? I
think something important to be considered, to be understood by
people about autism would be just that autism can present
(16:29):
in so many ways and that you shouldn't make assumptions
about the autistic person that you are meeting based on
the last autistic person that you've interacted with. So they say,
once you've met one person with autism. You've met one
person with autism and we're all so incredibly different that
there are going to be traits that we have in
common and similarities that will have between us, but the
way that those present in each person are just going
(16:50):
to be so different. I'm wondering what are some things
that you love and appreciate about your own autism? One
thing I really like is my ability to have great
passion for the work that I'm doing, be that with
dogs or with children. I think I've just been really,
really passionate about everything that I've kind of set out
(17:12):
to do in my life and I don't know that
I would have had that same passion and drive if
I weren't autistic. Yeah, I wanted to read a quote
from the Autistic Self Advocacy Network and the quote is
our society says that disability is the problem and that
the solution is to cure the disability or to try
(17:33):
and make the person, quote, less disabled. Unquote. The disability
rights movement says that people with disabilities are not the problem. Instead,
society is the problem when it does not accommodate people
with disabilities. Do you agree and how can we change it?
So I come at it from two angles, both as
a provider of services for disabled people as well as
(17:55):
a disabled person myself. There are definitely some systemic and
societal problems that, if they were removed, our lives would
be significantly easier. That said, there is no amount of
societal changes that is going to give somebody the ability
to communicate without being taught. That doesn't mean that they're broken,
that doesn't mean that there's something wrong with them, it
(18:16):
just means they need to be taught in a way
that they can understand. Like all people. All people have
skills to learn, all people have things that they need
to learn in their lives and no amount of turning
the lights down or changing the physical environment is going
to give somebody an ability that they didn't have before.
That is so well explained and it's also so applicable
just to humanity in general, to the human experience. It is,
(18:40):
and I think people might criticize me for saying but,
like you just said, it's it's so applicable to humanity,
not just the disabled portion of humanity, it is for everybody.
Accommodations are wonderful and they do help a lot of
people and they help for a lot of different things Um,
but it is not going to cure the problem. Not
(19:00):
to say that being disabled as a problem that needs
to be cured, but just to say that if you
are having a difficulty, a societal change might help you,
a systemic change might help you, but depending on what
it is, it also might not help you. I've enjoyed
talking to you both so much. Thank you. I've learned
a lot and I've I've really loved watching this series.
So Calin, thank you, and Kien, thank you so much.
(19:21):
Thanks for having us. It's great director Kian o'clary and
Klin partlow from love on the spectrum. My next guest,
Jennifer Cook, is a speaker, consultant, autism advocate and the
author of several books on autism, including her memoir autism
in heals, the untold story of a female life on
the spectrum. Cook works as a dating coach with the
(19:44):
participants on the Netflix show love on the spectrum. She
brings her own experience as a person with autism to
her work and she really tailors her help to suit
each individual's particular needs. Before we talked about the show itself,
I wanted to hear how she defied autism in her
own words. So the technical answer is going to be
that it's a neurological and neurodevelopmental disorder, and you can
(20:09):
certainly say that that is true. It's Uh, you know,
clinically it's a disability, and that's how any professional is
going to go ahead and describe it. However, that being said,
I think it's more like a constellation. You know, if you,
if any of us, look up into the night sky
and we see, you know, let's say we're looking at
the big dipper. Okay, well, we're imagining that. There's a
picture there. Those are all their own little, you know,
(20:31):
stars in the sky, but if we journeyed on over
to Mars and we looked up in the same place,
we wouldn't see that same picture. That's because those stars
are really, you know, in and of themselves. They're doing
their own thing. It's together the cluster that we are seeing,
that we're imagining together, we're putting a parameter around that
is what we then label the big dipper. That's a constellation, right.
(20:53):
That's the same thing we do with autism. It's a cluster,
a constellation of otherwise unrelated that's what syndrome means otherwise unrelated,
you know, issues, challenges. I don't like to use the
word symptoms because that to me, that sounds like I mean,
that could be a cold, you know, it just sounds wrong,
but that we then associate together and form this concept
(21:14):
that we call autism. That was very well explained. And
given that it's a spectrum and everything is is different
for every single individual, just as you sort of just
made clear for us, because we're talking about dating and
people on the autism spectrum dating, can you give me
a sense sort of in general what some of the
challenges that people on the spectrum might face when it
comes to romantic relationships? Absolutely, you know. So you'll notice
(21:38):
I speak and a lot of metaphors and that in
and of itself will challenge a lot of beliefs that
in fact, I've I've I've heard before. You know, you
can't be autistic. You use too many metaphors for an
autistic person to understand. And my point is, well, that's ironic,
because I am in fact and I can clearly understand
what I'm saying. So I think maybe that's not where
the challenge lies. I think, as with anything else, that
(21:59):
there are uh different levels of ingredients and everybody's secret
recipe and everyone's secret sauce, and it's sort of like
going to starbucks and seeing the menu where you can
get a million different kinds of, you know, Latte this
and Latte that and refresh her this and whatever else,
and it's essentially the same ingredients just kind of mixed
in different recipes. Right. Well, that's what it's like being
on the spectrum too. So it looks a little different
(22:22):
because the end result of that recipe is going to
be a little bit different for each person. But it's
less of a linear spectrum and more of a mixology
kind of thing. And if you can imagine that the
same ingredients are going in and whether that's sensory sensibilities,
whether that is challenges with social cues. The biggest one
is what I call mind blindness, which is literally the
(22:43):
inability to innately, organically step into somebody else's shoes, into
someone else's perspective. We can learn to do it beautifully,
we can learn to intellectualize the process that comes organically
to others, but we have to do it intellectually. We
have to learn to do it. So all these things
add up to a cocktail, if you will, of challenges
(23:06):
when it comes to making any kind of relationship work,
and that doesn't mean even just a romantic relationship. Means
friendships too, an employee employer relationships, pretty much everything. So
if you know that a dating relationship, if it's going
to work and be of any substance, has to have
a foundation of friendship first anyway, right, then it kind
(23:28):
of makes sense that you can understand if you're in
a position where you naturally don't take somebody else's perspective
and your communication, your social communication queues, might be a
little bit different. You might tend to go on and
on and on when you know something well and not
realize you're, quote unquote, taking up all the air in
a conversation. Things like that. It's doubly hard. Dating is
(23:49):
hard for everybody. You know, it's not an easy thing.
Be No need for dating coaches, right, but throw these
little challenges in the way and again, with maybe a
little bit more here and a little bit more there,
the recipe is always kind of, kind of be the same.
So you see a lot of masking sometimes and a
lot of mimicking, and that's not always a bad thing,
(24:09):
right I want to talk a little bit more about
mind blindness that you mentioned, because I think putting yourself
in another person's shoes, are connecting with them by imagining
what they might be thinking or feeling is a part
of dating for lots of neurotypical people. So can you
tell me a little bit about how how one learns
to work around the tendency towards mind blindness when interacting
(24:31):
with somebody else? Sure you know it's you're gonna hear.
Everything that I say is going to be applicable for
everybody on the human spectrum. I mean that's the reality.
Nothing that I say is truly unique to people who
are autistic. It's that it's life with the volume turned up,
if you can kind of imagine, with all the intensities
(24:52):
turned up. So that being said, mind blindness is not
something you can train yourself out of. What you can do, though,
is become aware that you have it. So, just like
I'm terribly nearsighted, I mean terribly, so I know very
well that if I don't have my contacts in, what
I see is a big smudge that perhaps resembles reality,
(25:12):
but in no clearer perspective. I know that. So I
know I've got to put in contacts or I know
I've got to put glasses on so that I can see,
so that I can make heads or tails of the world. Well,
it's the same thing if you know that you're going
to have to ask more questions that might seem obvious
to others. First of all, nobody gets annoyed if you say,
could you tell me a little bit more about you,
(25:33):
or could you explain more about that? Nobody's going to
get annoyed when you want to show more interests. That's
you know, that's sort of a misconception, and this is
one of the things I coach a lot. It's okay
to not have it all together in the moment. It's
okay to say, what's that like for you? I can't
even imagine. Literally, I can't even, because maybe couldn't you know,
I can't even imagine what's that like, and I think
(25:56):
they're communication skills that truly would only benefit anybody. Thinking
of a game that you sort of played with one
of the participants on love on the spectrum. That was
the ball rolling game, where you sort of modeled what
it's like to have a conversation. Can you say a
(27:19):
little bit about that, because I think it does applied
to everyone. UH, no matter. Yeah, absolutely so. We're using
a ping pong balls myself and one of the participants.
Her attention was real short and she would kind of
be here, there and everywhere, and that makes it hard
to have any real connection with somebody else. Obviously you know,
(27:39):
because if you're not playing, almost like you know when
you're in the pool or when you're a kid and
you play that game with balloons and it's how many
times you can both keep it up together, you're not
competing against each other, you're working together. Right, okay, it's
that sort of thing. That's what a conversation is. So
among the dating tips that I give you know, one
of them is that you have to start with the
foundation of friendship. But in another one that I'll often
(28:01):
say is that when you are having conversations, you are
not interviewing someone and you're not also testing to see
if they can keep up with you. This is not
a moment to try to show off either. So what
I wanted to do was ground her with a concrete
experience that would go to get it at an abstract topic,
(28:22):
the idea of being a conversation right, not being one side.
And one of the things that I did first was
I had a whole bunch of pain pung balls and
we were on the ground and I said, okay, now,
what your favorite color was? That, you know, four or
five questions in a row when I rolled them all
at her. Perfect. So I'm gonna roll this to you,
but I'm going to roll a bunch of them ready.
So what do you like to do? What's your favorite color?
(28:43):
My favorite color like dogs. Yes, my favorite color. That's
a lot of questions. It is a lot of questions.
When somebody asks you a lot of questions like that,
it's hard to figure them out and listen to what
they're saying, which means I didn't get to know anything
about abby right. Okay, so let's try something different. Will
(29:04):
you roll the balls back at me? What's your favorite
thing to do? I like to play with my dog.
What's your favorite thing to do? Work out and swim.
Roll it back. Okay, Great. What do you like best
about swimming? Because that Mermaid Swim, but I don't want
to go too far out where there's dangerous and roll
it back. You just gave me a good answer. Yeah,
(29:25):
that's true. Sharks can be scary. Right. Do you know
what you just did? You just had a conversation with me.
Oh my God, so what it instead? And then, right,
was then, okay, let me roll this question to you
and you're gonna have to roll it back to me
with an answer, and then I'll roll it back to
you with a tell me more, and in doing so,
(29:47):
you've got to adapt, you've got to move, you've gotta shift.
Rigid thinking is like being uncooked spaghetti. Right. So it's
that unbendable snap here, if you will. Right, but that,
with a little time and a little more like the
little nice bath in the water, you can be flow ere,
you can be flexible. This is you're literally having to
go with the flow, actually, and get that grabbed, that
(30:10):
little ball, that conversational nugget, and keep it going. And
that's the goal. What the best part of that experience
was for me was seeing how she absolutely didn't realize
what was happening until it was over and I said
to her, you just you just had a conversation and
it was this Whoa, I did moment. It's kind of
like being a kid and you're on the bike and
they're pushing you along and they're not pushing you along
(30:31):
anymore and you haven't realized that you're actually the one
riding the bike by yourself. That's what she had done.
You sort of, I guess, hinted at the balance between
helping her have a conversation that would be engaging for
somebody else, but also celebrating the fact that the way
that her mind works makes her an exciting person to
talk to. So maybe you can speak a bit to
this idea of as a coach, like how do you
(30:52):
guide somebody in dating while also helping them to be
their full selves on the spectrum? You know, I think
it's just as any good, if you will, teacher would do. Right,
a teacher isn't a doctor, and neither as a coach,
and not there to to fix someone, because I don't
believe they're broken. Right. I don't believe that I'm in
(31:14):
there to repair something or get the autism out of them. Right.
It's that there's a very able list, if you will.
You know perspective right now, that that's what is. That
what we're trying to do when you're learning social rules
or your practical absolutely, from my perspective, absolutely not. It's
a matter of having multiple choices. It's a matter of
being a little bit bilingual, having social ease as a
(31:36):
second language in your back pocket that maybe you can
use to express your authentic self as well. And, Um, abby,
the participant we're talking about, definitely she's Quirky, she's out there,
she's funny and if she were stayed and reserved, I'm
sure she would be fascinating, but she wouldn't be abby,
(31:57):
and so that wouldn't be putting her out there in
a real way. And so, Um, if we want abby
to be happy and find somebody, which she has, then
you know, you've got to be able to do it, coach,
in a way that's still, like you said, keeps that
authentic self, says that true, true center. Yeah, yeah, you
also mentioned masking or mimicking before. Can you help me
(32:17):
understand those concepts a little bit better? Sure, and they're
different and they can both work for you and against you.
So start with the mimicking first. One of the things
that you'll see with kids on the spectrum oven times
is they'll they'll be able to script, that is too
play off of an actually um re enact scripts from
their favorite TV shows or books to the letter. I
(32:40):
did a lot of theater growing up. I think that
actually helped me in that I could pick and choose
lines from characters that I played two then play characters
in real life a little bit, not in a way
that made me inauthentic or falls but if I wasn't
really sure what might best fit this social situation, especially
(33:04):
if it was around peers. That was my hardest we
tend to struggle the most when we're around our own
peer group. Um, we do better if we're with somebody
younger or older, or if we see your role or
we are in charge, we are or the subordinate, but
when it's spontaneous, pure relationships, which, of course, that's what
dating is going to be usually, you know, that can
(33:24):
be the hardest. So for me I literally would use
scripts Um and I would use the different like stage coaching.
You know that you would get from a director, and
that's one of the hard things the scripting can be.
It can be wonderful, it can in that it does,
it can empower you and give you a vocabulary, but
it can also be really challenging and cause dangers when
(33:48):
you are not fully aware of the entire situation. The
entire plot that you're bringing with with that script. Can
I also ask like when you're doing that, in that
moment it sounds almost like there's a split going on,
like you're aware of yourself as a as a person,
and then you're aware of a sort of script that
you're trying out to fit into a social situation. And
My understanding that correctly? Yeah, no, you are. It really
(34:10):
reminds me with again, with a foreign language. Right, so
if you're at a level with a foreign language where
you can speak pretty clearly, pretty fluently, but you still
are having to think it and then there's that moment
after you've finished speaking, where you're going. Please, did I
say the right thing? Right? You know, I speak Spanish,
but I can, I can think very clearly back to
a time when I said that, which means I said
(34:34):
ladies and horses in stead of Ladies and gentlemen, Right,
and it took me a moment to realize what I
had done and white people were looking at me strangely.
So it's sort of that same thing in that you
know you you are watching for reactions, and doesn't mean
you're always going to interpret the reactions correctly either. So, yeah,
there is that that momentary. It's like a lag, I suppose,
(34:57):
you know, making sure you don't have to bleep something out.
It's sort of like that in real time. And is
that something typically that some people on the spectrum do
in order to navigate their way through social situations, almost
like that second foreign language, is social interaction? Yeah, it's
exactly what it is. And so, and that's where we
get to what we call masking. And masking can be
conscious or unconscious, right, it can be the I am
(35:18):
trying to quote unquote, look normal, and this is where
I always point out that, you know, normal and typical
or not actually synonyms. But yeah, and that's where masking
can get very dangerous, because if you are trying to
suggestribly to be something else, then you are, you know,
if there's subterfuge happening, I mean you're literally, you know,
destroying your own self in an effort to be something
(35:39):
and someone who you are not. And we we can
look at all groups in society and see where that
has happened and why. You then get higher rates of
suicide and depression and eating disorders and self harm, and
that's what you'll see, especially among women and girls on
the spectrum. The rates are very, very high. In fact,
in my work one of the things I'll say frequently
is that if a girl or a woman has an
eating disorder, truly disorder, then that should be considered a
(36:01):
red flag to consider whether or not choose on the spectrum,
because it's that prevalent. So, that being said, you know,
masking can also be away if you're if you sort
of know what you're doing. You can also give you
a sense of control, and that's not a bad thing
because you can feel a little bit more like, okay, look,
when we put on our clothes every day, we're putting
on a costume. It's not a false one, it's what
(36:22):
we're choosing to present to the world. So in that
sense I think it can be a good thing. But yeah,
it is very much like speaking a second language. Yeah,
the masking sounds quite painful and it sounds like it's
very much based in a sort of almost like double think,
of what society expects you to be like versus who
(36:43):
you are. Yeah, no, and you're a hundred percent right.
What it means is that I can mask, if you will,
so well that whatever support or help I might need,
you won't see it, and so you're getting this this
sort of duel will experience where you're probably going to
be much more included, right, like. I know I've gotten
(37:05):
this a lot from the show, you know. And just
in like, you don't look autistic, you don't seem autistic
or you know, it's sort of then lends itself to
the like. You know, what does what does that mean exactly?
And I know what it means generally. What that means
is that because I've got high language skills. I mean,
I suppose I'm the gift of Gab word girl. So
(37:26):
that makes it look like there's no challenges, but that's
because I'm really good at mimicking, right, at copying and
then playing around with it and twirling those words into
something that works. I'm pretty good at speaking of foreign language.
Is What it comes down to. But Um to the
larger question, just, you know, of masking and mimicking and
(37:49):
where it all comes together, is that that's one of
the reasons that I tend to be pretty even flowing
when it comes to language. Uh, using the verbage. Regarding
the spectrum, I don't care much whether people stay people
with autism, person with autism, autistic person like it, just
it doesn't bind. Language is powerful and important, but it
doesn't bother me so much one way or the other.
(38:10):
I'd rather just make sure we can get to the
nut and be able to have a conversation rather than get,
you know, caught up in language or in the specifics
of verbiage. But the one exception to that is the
phrase high functioning or low functioning. I find that really
disturbing because, well, so many reasons, but one of them
(38:31):
is that you can be, you know, you can literally
be a non speaking autistic and have a verbal IQ
in the genius range. So I mean there is that,
you know, but when you stay high functioning or low functioning,
you're generally not taking account and not taking into account
the work that's going on to mask, to put it
(38:52):
out there, to be and so if you're too good
at it, if you're too good at your second language,
then you know it doesn't look like you need to
board or help. And if you ask for it, which
you probably won't anyway because you're not really sure what
that would that help would look for like, it's going
to seem more like you being lazy or difficult or
a know it all. That kind of thing, right. There
(39:13):
is a suggestion that you might have for listeners in
terms of terms that you do, uh, a lot of. Yeah, yeah,
I like to use more or less obviously in need
of support. Oh cool, yeah, yeah, you know. So I
think that's just kind of what I say and and
it works. Um. Again, I'm hard to offend, truthfully, but
(39:33):
I think that gives a I think it gives a
little bit more um onus to what's going on underneath.
That's author and advocate Jennifer Cook. If you're enjoying this episode,
don't keep it to yourself, tell a friend and be
sure to follow us on the I heart radio, APP
apple podcasts or wherever you get your podcasts. After the break,
(39:56):
Jennifer Cook shares how the terms normal and typical I
mean two very different things. I'm Tallyash Langer and you're
listening to here's the thing. While Autism Advocate Jennifer Cook
(40:20):
is clearly an expert in the space, she actually wasn't
aware of being on the spectrum herself until she was
in her thirties. I was curious about how the later
in life identification affected her. The phrase autism, and you
know well, women and girls in general, that they didn't
go hand in hand. You know, Um, it would have
(40:40):
been more of a classically autistic child that would have
gotten that diagnosis, something someone who was non verbal, really
hard to integrate into society. That that was not me.
I was the goody good girl who, you know, was
the overachieving teacher's pet. I mean, let's that's well, I'll
just put it right there. That's what I was because
I was following all the rules. I was looking to
(41:01):
see how to be and how to be were. What
got rewarded the most was, you know, being what the
adults were telling me to do. I was not diagnosed
or identified, or whatever phrase you want to use, until
after my three children. Now my kids are now I
have a daughter who's nineteen, a son who's sixteen son
who's thirteen. But this is going back eleven years ago,
(41:21):
and at that point I had really fought for my
daughter's diagnosis, and I say fought for in the sense
that she was checking off boxes. But what wasn't quite well,
the phrase was weird enough that I was told she
wasn't weird enough to fit the bill. Basically, my kids
were diagnosed with what was then asperer's syndrome. You know,
it's now just all considered to be under the autism spectrum,
(41:42):
bubble Um, an umbrella. I was identified because I went
through and really I saw myself in my kids. My
Dad had passed away not long beforehand. He had he
was just a classic absent minded professor and that is
a real that's a persona of of Asper Syndrome. So
(42:03):
it was kind of like, okay, I think that I'm
the missing link between the generations because Pretty Dang sure
he had it. So therefore, but I had to really
sit back and go through all of these bullet points
of how autism presented, or how aspergers presented, what it
might look like. But all the ways that it, quote unquote,
might look tended to be very, quote unquote, manly or
(42:26):
boy focused. Right like, the questions would be things like,
you know, does the child line up their toy cars
and trucks? Now, I didn't have toy cars and trucks
growing up. First of all, that question always throws me
because doesn't one line up things that are like aren't
lines of traffic? Lines of traffic anyway? It's so, but
this would be the autistic reaction. Is that I'm questioning
the questions, I'm getting right, that there's the autistic reaction
(42:50):
is that I'm getting into the nuances while missing the
bigger picture. But what I could say that I did
with my barbies is that I would set them up
in Tableau and I would take pictures of them and
that would be their adding albums. Rather or script we
go back to the scripting or script news stories that
they were then, you know, re enact other little kids
not necessarily doing that. You know they're not really interested
(43:10):
in doing that. So for me, finally getting the the
identification at thirty five, it took me having to go
through every one of those bullet points, UN zipping them
and saying, okay, well, what is it that in this
by doing this, in this behavior, somebody's trying to achieve?
What is the need that's being met? Ironically, I was
(43:33):
asking the diagnosticians to change perspective, which was what I
was not supposed to be able to do. Only most
of them were not doing and it was by doing
that that I could kind of go through it all
and say here's why, and yeah, and that's how it happened.
That's fascinating. How did your life change. When you came
to that realization, you know, it was very much the
(43:56):
moment of okay, self forgiveness. You know, when I was
a kid I used to think I had somebody once
say to me you're too smart for your own good,
and I you know, that's an expression and I realized
that they probably didn't mean it, but I really took
that to be the case and I thought, okay, well,
you know, what do you do with that? I remember
(44:17):
clearly starting to write a book when I was in
fourth grade. I had titled It Smart Because I thought
that was the problem with my life, was just being smart.
But can you imagine that? Now I would break my
heart to hear a child doing you know that, feeling
that way. But but no, for me it was a
great relief because it made everything else makes sense, that
I could be a genuinely kind, good person who also
(44:39):
was clueless at the same time and, you know, seemed
too smart to be clueless. It all just made sense,
and so for me that was a great, great gift.
Absolutely he said a little while ago that normal and
typical are not synonyms and it sort of went by.
So I want to ask you to please elaborate on
that sure. So this is one that I I really
(45:00):
like staying in front of crowds where I can pick
someone out of the crowd who might be saying visually
a minority. So I will tell a story. There was
a very small woman who was turned out. She was
of Pakistani descent, and I said to her, would you
come up here with me please, on the stage and
in making this point, and she was a spectrum mom
(45:21):
and I said, okay, let me ask you a question.
Would you agree that it is less typical to be
a Pakistani American woman? Then say me, German and Irish,
French American woman, because when we're talking about typical, we're
talking demographics, we're just talking numbers, pure numbers. That's it.
(45:42):
And she said yeah, that's true. There are simply fewer. Okay, perfect, great,
and I said all right, so we would say that
it's that you are less typical. And then I said,
but if I said you are less normal than me,
what would you say? And she said, Oh hell no,
and it was great because there's this little, teeny tiny
(46:03):
woman and just oh hell no, and I said exactly right, ma'am.
Thank you very much. You may sit down to the
whole audience community cheered for and it was great, because
that's the point. One has everything to do with demographics
and numbers and there you know. It's absolute value stuff.
There's nothing attached to it's neutral. The other normal is
everything about judgments and everything about wanting to be something,
(46:26):
wanting to fit. Everybody wants to be, quote unquote, normal,
but do you really? I mean we all want things
to be easier in life. Nobody wants to have to
fight a fight and I think that's normal and that's
that is normal, and I think and I think that's okay.
It's it's all right to not want to have to
fight more battles than you have to already. Life is
not an easy thing. But that being said, you know,
(46:48):
there really is no normal. And when we are, if
we are believing that by being less than typical, we
are less than normal, then I think that's and self
esteem goes by the wayside. That's when you get into levels,
like I said earlier, of depression and self harm, of loneliness,
(47:08):
of there being a great disjointed nous between intelligence and
career progression. Things just don't look good when you don't
when you can't find a way to see yourself in
normal right. What do you see as the difference between
autism awareness and autism acceptance or even celebration? To me,
(47:33):
acceptance sort of implies that there's something that's not ideal
that you have to accept, versus even inclusion or, as
you've just said, celebration. So talk to me about that. Yeah, yeah,
so inclusion to me, you know, like inclusion is that
should be like. That is not something to celebrate, like look,
we're being inclusive, like that's like being in elementary school
(47:54):
where you have to invite every kid in the class
to your birthday party. Do you want to be the
kid that everybody had to in? No, you don't want
to be that kid. That's inclusion, right, and that shouldn't
be the goal. That should be the baseline where you started,
start off from. So to me, I think a lot
of it, and maybe this is just the way mine works,
I see autism awareness or autism acceptance and I think
(48:15):
a lot of it has to do with a literation,
to be very honest, and then it works out easily,
but it's my works that way. So I see the
a's and I'm like, well, obviously that goes together, but
I think yeah, you know, when we think of tolerance
or we think of, you know, awareness or acceptance, it
can be really hard to not like equated with like
an ingrown tonnail or something that you've just learned to
(48:37):
like acceptly. there. Yeah, I deal with right. You know,
I'm I'm on the Board of the Council of autistic
advisors from the for the Autism Society of America, and
it was a huge deal to get to the point
of being able to say autism acceptance, because that was so,
so controversial even to some. Beyond going beyond awareness, I
(48:58):
like to push it. I like to say, can we
celebrate in the same way that you celebrate pride month
or whatever else? You know, it is by having difference
that we come up with something richer, more hybrid, vigor
in our world. So yeah, yeah, I think a little
bit of a little bit of melody to the tune
makes nice harmony. Okay. So just to close off then,
(49:18):
how can we all sing together? How can we all
help people in the autistic communities to be celebrated in
the way that they deserve to be? I think through
moments like like this, through listening to autistic voices. I
think for the autism community, if it's up to us
to try to explain a lot, just without disdain, without
(49:39):
you know, there when you've been through a lot of hurt,
it can make you bitter, and I think so you'll
see that there there can be a lot of bitterness
or anger Um amongst those who have felt rejected or
other for a long time, and that, I think, can
be dangerous. So for the autism community ourselves, I think
what it comes down to is patience and gentleness and
(49:59):
kind nous, that which we would expect and hope for
for ourselves, for the rest of the rest of the world,
if you will. It's willingness to not be afraid of
the word autism so that when somebody is saying Golly,
I think I identify with that. There's something in there
that makes sense to me that the response to that
isn't no, you're not, no, you're not now you can't be,
which really has more to do with the person who's
(50:20):
reacting that way in the first place. It's about listening,
it's about learning, it's about having more depictions like this
show that are real, that aren't, you know, scripted, but
that are respectful. It's not autism porn if you will.
It's uh, it's not. You know it's it's not playing
to a disability that everyone let's all stare at the
autistic people. You know. It's instead giving a platform to
(50:41):
real people, getting to be real people. Jennifer, I've learned
so much from talking with you. Oh, I'm so glad.
I'm just extremely grateful for your your clarity and your openness,
and thank you so much for making the time to
talk today. Oh, I really really appreciate it was wonderful.
(51:03):
My thanks to Jennifer Cook, Kean O' clary and Kaylin partlow.
You can find love on the spectrum. Both the Australian
and American seasons on Netflix were produced by Kathleen Russo,
Zach mcneice and Maureen Hoban. Our engineers this week are
frank imperial and Brent bow drug. Our social media manager
is Danielle Gang Rich. I'm Talia Schlanger. Alec Baldwin will
(51:25):
be back next week. Here's the thing. Is brought to
you by I heart radio.