What it's really like to have autism

"Autism is not a disease; it's just another way of thinking," says Ethan Lisi. Offering a glimpse into the way he experiences the world, Lisi breaks down misleading stereotypes about autism, shares insights into common behaviors like stimming and masking and promotes a more inclusive understanding of the spectrum.

Autism is something
that many people know about.

For example, some people think

that autistic people
are fair-skinned males

that speak in monotone

and constantly go on and on
about the same topic.

Some people think that autistic people
do not know right from wrong,

avoid attention

and usually say the wrong thing
at the wrong time.

Some people think that autistic people
are socially awkward

and lack humor and empathy.

Now if you agree with what I just said,

I'm sorry to tell you,

but you do not have
the right impression of autism.

How do I know?

Because I have autism.

I do have my own obsessions
with things like electronics

and public transit,

but that does not define me.

Each of us are different
and unique in our own way.

However, there is not
a lot of information out there

on what an autistic life
actually looks like,

so people often resort to stereotypes.

And we see these often in the media.

Some of the more common
stereotypes in the media

include being socially awkward,

lacking empathy

and even being a supergenius.

And the lack of knowledge
on autism doesn't stop there either.

Did you know that some people
are trying to find a cure for autism?

That's because they see it
as a negative thing,

as a disease.

Many people are challenging the idea

and to us, we think autism
is not a disease.

It's just another way of thinking
and looking at the world.

Our brains function differently
from most people's brains.

Think of it like comparing
and Xbox and a PlayStation.

They're both highly capable consoles
with different programming.

But if you put your Xbox game
in a PlayStation,

it won't work, because the PlayStation
communicates differently.

When I look in the mirror,

I see someone who thinks differently.

Oh, and I also see nice hair.

(Laughter)

(Applause)

But the question is,

am I really diseased
if I just think differently?

The main problem with living autistic
in today's society

is that the world just isn't built for us.

There's so many ways
that we can get overwhelmed.

For example,

the thing that makes me overwhelmed
all the time is loud noises,

which means I never
crank up my music really loud

and I usually am not a fan
of large parties.

But other people on the spectrum
might get overwhelmed

with things like bright lights
or strong smells

or gooey textures

that all have the potential
to create anxiety.

Think about all of the social gatherings
you've been to in the past.

Was there loud music playing?

Were there really bright lights?

Were there lots of different food smells
going on at the same time?

Were there lots of conversations
happening all at once?

Those things may not
have bothered you guys,

but for someone with autism,

they can be quite overwhelming.

So in those situations,
we do something called stimming,

which is like a repetitive
motion or a noise

or some other random fidgeting
that may or may not seem normal.

Some people will flap their arms

or make a noise or spin.

Ya, it's basically our way of zoning out.

It can often feel necessary
for us to stim.

However, it's often frowned upon,

and we're forced to hide it.

When we're forced to hide
our autistic traits like this,

it's called masking.

And some people mask better than others.

I mask so well sometimes
that people don't even know I'm autistic

until I give them the big reveal. (Laughs)

But at the end of the day,
it gets really stressful.

Even something like
doing my homework at night

becomes very tiring.

Some people think,

because of our ability to mask,

that this is the cure to autism.

However, all it really does
is makes us ashamed

of showing our true selves.

Another common stereotype
that is often associated with autism

is that autistic people lack empathy.

And again, this is not true.

I actually have lots of empathy.

I'm just not really good at showing it.

Whenever a friend is trying to tell me

some of the struggles
that they're going through,

I often don't know
how to express my reply.

And that is why I don't show
as much empathy

as my nonautistic friends do.

Emotional expression,
however much or however little,

is difficult for me.

And that is because I am bursting inside

with every single emotion
one feels at all times.

Though of course,
I cannot express it that way.

Otherwise, let's say,
happiness, for example,

would come out as a huge burst
of gleeful wheezing,

hand flapping and loud vocal "woohoos."

(Laughter)

Whereas you may just smile.

(Laughter)

Whether it be receiving
an awesome birthday gift

or listening to a tragic
story on the news,

I cannot really express my reply
without bursting,

so once again, I have to mask it
in order to appear normal.

My inner feelings are unlimited,

but my mind only lets me
express extremes or nothing.

So my ...

I am not great with my emotions,

and I communicate differently,

and because of that, I was diagnosed
with autism spectrum disorder.

This diagnosis helps me
and my friends and family

to know how my mind works.

And in the world,

approximately one percent
of the population

is diagnosed with autism
spectrum disorder.

And this number is growing.

However, we are still a big minority.

And there's still lots of people
that do not see us as equals

to other people.

This is my family.

And in my family,

there is one other person
who is also autistic.

My mother.

Yes, adult women can also be autistic.

My dad and my brother
are both nonautistic.

Sometimes it can be a bit difficult
for us to communicate with each other,

however.

Sometimes I'll say something like,

"Oh, Toronto's Union Station, right?"

thinking that I can

help them to remember
certain aspects of it.

When they get confused, I often
have to elaborate myself on that.

And we often have to say things

in a number of different ways
so that everyone understands.

However, despite all that,

we all love each other
and respect each other as equals.

In his book "NeuroTribes,"

author Steve Silberman states
that autism and other mental conditions

should be seen as naturally human,

naturally part of a human spectrum

and not as defects.

And this is something
that I agree to completely.

If autism was seen as part
of a natural human spectrum,

then the world could be designed
to work better for autistic people.

I am not ashamed of my autism.

And I may not think like you,

or act like you,

but I am still human
and I am not diseased.

Thank you.

(Applause)