Women and autism: towards a better understanding | Sarai Pahla | TEDxMünster

While it is true that autism is largely a male disorder, women suffer from it too. But their unique stories often go untold. Sarai Pahla is a young woman from Zimbabwe who grew up in South Africa and has been living in Germany for a couple of years. She suffers from Asperger's syndrome, a high-functioning form of autism. In her talk, she describes the difficulties she has had to master in the course of her life, and she delivers a manual for those who dare to engage in a relationship with autistic women.

When people take the time to understand what autism really means, both sides benefit from it. At TEDxMünster, Sarai Pahla tells of her experiences with autism. She grew up in South Africa, but did not receive her diagnoses until much later. Pahla was lucky however because her parents gave her much freedom despite her idiosyncrasies. Now she lives in Düsseldorf and works as a freelance medical translator.

This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at https://www.ted.com/tedx

Hi.

So I'm going to start my talk today

by telling all of you that my biggest fear
is that I will never be loved for who I am

in a romantic relationship.

Now, some of you are already going,

"Obviously.

You are morbidly obese."

Some of you can see
that I'm not wearing makeup.

Some of you can see that I have
a bit of a strange sense of style.

Anyone who knows anything
about African hair is wondering,

"Why haven't you covered it up
with a weave or with braids

or straightened it?" -

with the same ingredient
that we use to unblock the shower drain.

And I'm here to tell you
that this is not a superficial problem.

So I went and searched on Google,

and I found out
that when people look at me,

they expect me to be good
at relationships because I'm a woman.

Even worse,

they think I'm supposed to be "nurturing"
and have nesting instincts.

And I'm here to tell you
I am terrible at relationships

and managing relationships.

I find interacting with people
in real life inefficient and exhausting.

I'm also totally undomesticated:

it takes me a month to do the same chores
that other people get done in a week.

And when I was in medical school,

I learned that we each
only get one biological mother,

and when she stops cooking,
cleaning, doing your laundry,

and nagging you to look after yourself,

that's it.

It doesn't become my job
because I'm a woman.

And anyway, I don't like
doing that stuff for myself.

So why should I do it for someone else

when I could be playing
the latest Call of Duty?

(Laughter)

I also find the idea of living
with someone a bit ridiculous,

because, I mean, if Superman
had a fortress of solitude,

surely everyone can understand
that I need one,

right?

I have what used to be called
Asperger's syndrome,

which is just a high-functioning
form of autism.

And you can read up
some of the specifics after this talk,

but I think the main point

is that I'm great at learning information
that's presented in a logical way,

like human physiology,

but I'm terrible at creating systems
in the real world,

like putting objects correctly
into a cupboard,

because there's no formula for that

and I need a formula.

Right?

For me, it wouldn't be so bad,

but as a woman with autism,

the problem that I find
with the rest of the world

is when people talk about people
who are nerdy, intelligent,

socially awkward,

socially isolated,

and who are obsessed with computer games,

but who can't look after themselves,

they're always talking about men.

So even if I'm honest about it,
people just don't get it.

So I thought the best way to talk
about being a woman with autism

is to talk about dating, right?

Let's go back to how I started, right?

Let's go back to my biggest fear
and where it came from.

So I was about 12

when I started noticing that people formed
these primitive sort of peer bonds.

Somehow, due to some
magic series of events,

a boy and a girl would come into school

and announce that they were now
"boyfriend" and "girlfriend."

They would, you know, exchange letters,

they would be seen together
between classes,

and it seemed like a great arrangement

because when they were
in this, you know, "relationship,"

then they were happy,

but when they went through
what was called a breakup,

then they were sad
and even cruel to each other.

So I thought, "Oh, yeah.

I totally want some of this
boyfriend and girlfriend action."

Right?

So I sat down and I catalogued
all the boys in my class,

and I looked for the ones who looked
like the lead singer of Extreme -

they're the band who sang
"More Than Words,"

if anyone knows them -

because this seemed
like a good criteria at the time.

So I selected a test subject
who met the eligibility criteria

and then observed them
in formal and informal settings,

and I would jot down my observations.

And you know, after a few weeks,
I'd review them,

write them up in the form of a report

and then deliver that to the test subject
with the obvious conclusion

that based on my excellent observations,

we would make a great
"boyfriend and girlfriend partnership."

(Laughter)

Right?

(Applause)

And for the life of me,

I could not understand why
this rational approach always failed.

(Laughter)

Okay, okay, to be fair,

to be fair,

there were other issues.

I was a black and native
English-speaking girl

growing up in South Africa

in the mid to late 1990s.

So, the South African black people
called me horrible names,

like "coconut" -

which means you're brown on the outside
and white on the inside -

or they said I was "too masculine,"

or they said I was
"too intelligent," right?

But then, on the other hand,
you had white people

who thought that dating me was "immoral"
or "disgusting" or "embarrassing."

And then, you had all these people
in between who were like,

"Just leave us out of it, please;
we don't want to be involved."

And even after coming to Germany,

where I've had the benefit of meeting
very educated and very liberal people,

things have gotten better,

but the autism-related
difficulties are still there.

So anyway, for about 20 years,

I tried many different things

to try and achieve this
"boyfriend and girlfriend status."

One of the most ambitious things I did
was learning how to code,

because I really believed

that the guy that I liked
was going to walk into the computer labs

and he was going to go, "Damn!"

(Laughter)

"That is some sexy syntax
you've got going there!"

(Laughter)

(Applause)

Obviously, he was going to sweep me
into his arms and say,

"I've never met anyone like you!"

I would feel faint, the light
would shine down from heaven,

angels would start singing,

and of course, we would live
happily ever after.

Right?

I did get more practical as time went on.

(Laughter)

Another thing I did was to study,
you know, dating self-help books

for like four years

because now, dating was a degree,

and I was trying to, you know,
pass the course.

And this was actually useful

because I learnt
that as a woman with autism,

eye contact is unbearable for me,

but this eye-contact thing

is where this whole boyfriend
and girlfriend thing starts

in the first place.

Unfortunately, failing over and over again
was really difficult for me.

So in the end, I would end up going,

(Crying) "Oh, he doesn't like me!

(Crying) Ah, it's not fair!"

And I would eat to relieve my frustration.

I mean, at one stage,

my comfort food was an entire apple pie,
with, you know, cream.

And now that I have tried
to live with the diagnosis openly,

I understand the problem.

If I want to develop
emotional intimacy with people

and have them know me for who I am,

I have to be honest,

and this means saying things like,

"Ah, actually, I find physical
stimulation unpleasant,"

or, say, "I can't go to a restaurant
because the way cutlery goes -

makes me feel like
my ear drums are bleeding."

And saying things like this to people -

you know, being honest about it
makes people think,

"Oh, well, I mean,

clearly you don't want
a serious relationship,

which is sad because
as a woman with autism,

instead of learning
that dating is fun, exciting,

leads to long-term partnership,

I learnt that dating leads to rejection,

coercion,

arguments,

abuse,

sadness,

and at the end of the day,

everyone else made me feel
like I was unworthy of love,

just because I was "too different."

And on the other hand,

I couldn't find a rational argument

to explain away this feeling of wanting
to connect intimately with people

because, I mean, wanting love
is something common to all of us,

whether you have autism or not.

So I'm really very glad

that I've had this opportunity
to say this talk to all of you today

because it's been so therapeutic.

(Laughter)

Even medical professionals
and psychologists will cut me off

when I try and talk
about this stuff and say,

"Ah, don't worry, don't worry.
You'll figure it out."

And, I mean, I'm 35 now.

When, exactly? You know?

So let's talk about some ways
that people can meet me in the middle,

because I know that I'm not the only woman
who struggles with this.

But the problem is other women
don't want to talk about it

because it's embarrassing
to suck so badly at something

that everybody else around you
thinks is completely natural.

You know?

I mean, the first thing I have to say

is if you want to date
someone with autism,

please go and read up about it first.

It saves so much hassle.

You'll react with
understanding and sympathy

instead of with rejection and ridicule.

Secondly,

I wish I could meet someone
who'd have a no-talking date with me.

So that means

we sit and communicate
using handheld devices,

but we're sitting
right next to each other,

so we still have the real-life connection.

And if you're wondering why,

if you're wondering why,

this is because for someone with autism,

dealing with conversation is one of the
most overwhelming things in the world.

Because when I'm having a conversation,

I'm watching your body language,
which I don't really understand anyway.

I mean, facial expressions -
it's all confusing.

I'm trying to listen
to what you're saying,

but then I'm also trying to block out
all the sounds and the noise and cutlery -

that's going on.

I'm trying to read your lips
because I'm also trying to make sure

that if I miss anything that I can't hear,

I've got to pick it up from your lips.

And then I've also got
to worry about myself.

I have to make sure that my own face
is in the right configuration to say,

"Oh, I'm having fun."

(Laughter)

I have to edit what I'm saying

so that I make sure that I don't
offend you, you know, accidentally.

I have to monitor my own body language
and deal with my own discomfort

because even sensory stimulation,
like having smart clothes on,

is unbearable for me;

it's horrible.

So I would, actually, truly,
rather be in my room,

you know, barefoot,
in front of my computer,

but I make the effort to go out
and interact with people in person.

So it would be nice
if people could meet me halfway.

I think the next thing to say
is, please, verbalize.

I know you guys all understand
what a wink or a head tilt means,

but we barely even notice,

if we even understand what you're doing.

Ideally, you should say things like,

"I'm having a really good time with you,

and I'd like to put my arm
around you now,"

so that we can logically
process the information

and prepare for the stimulation
that's going to come,

instead of going, "Ew!
Touching! Gross, gross!"

And I think the last point for me
is that you have to remember

that someone who's a woman with autism
has probably been traumatized

by the dating process.

For me,

I didn't even know what being hit on was

until I was a my mid-twenties.

So if someone came up to me
in the supermarket

or, you know, in a public place

and wouldn't leave me alone,

I would, you know, scream and get upset

because I thought they were trying
to kidnap me or something.

You know?

And on the other hand,

now that I'm older
and I have more experience,

I'm afraid whenever someone
shows interest in me

because they expect me to have
a huge amount of dating experience

that I just don't have.

So a good example was, recently,

I was dating someone who brought up
the topic of moving in together

just a few weeks into dating, you know.

Most other women
would be like, "Yes! Score!"

You know?

And instead, I was like, (Crying) "Oh ...

Ah, he doesn't like me!"

You know?

And it's something
that you have to accept,

that these relationship milestones
are just going to take longer,

and it's something
that everyone else has to deal with.

So after telling you all of this stuff
about women with autism,

why would you want to date them anyway?

We sound kind of complicated
and difficult, right?

Well, one good thing I can tell you

is that I definitely regard the people
that I'm in love with

with the sense of like child-like
admiration and wonder.

Instead of checking off, you know,
points on a list, like,

"Is he going to be a good breadwinner?"

you know.

I try and use my abilities
and my weirdness

to make life better for the other person

because I want to make up
for not being a typical girlfriend.

I'm loyal, I'm passionate,
and I'm intense.

I'm a woman with autism,

and I reward understanding,

direct communication,

and tolerance

with unconditional love.

Thank you.

(Applause)