Predicting overload: autism spectrum disorder | Paul Fijal | TEDxEastVan

In this moving talk, Paul Fijal paints a vivid picture of what it’s like to live with autism. He explores the concept of empowered care, a personalized approach that bridges the information gap between individuals with mental health disorders and currently available care solutions.

Paul Fijal is a young social entrepreneur and Lead Biomedical Engineer with Awake Labs, who provide personalized, quantified care solutions to people living with autism. He is also dedicated to growing Vancouver’s reputation as a hub for social entrepreneurship and impact ventures. Paul is currently involved with the Coast Capital Savings Innovation Hub and is helping to bootstrap the brand-new MedTech Development Hub at VGH with a group of young engineers and entrepreneurs. A francophone originally, from Calgary, Alberta, Paul graduated from the University of British Columbia with a BASc in Mechanical Engineering, Biomedical option, in May of 2015. He’s interested in new ventures focusing on social impact, as well as the biomedical and biotech industry.

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

I'm an engineer by training
and an entrepreneur by choice.

I've been taught to be analytical,
to think critically,

and to look for problems to solve.

Over the past little while, though,

I started getting a deeper appreciation
for the fact that some things,

beyond needing just a simple solution,

require understanding.

I'm going to begin by telling you a story

about Jamie and her
eight-year-old son, Jacob.

It's December 31, 2013,

and Jamie and Jacob are both getting ready

to go to a New Year's Eve party
hosted by Jamie's sister.

They're getting ready to leave
and step out of the door,

and Jamie suddenly realizes
she forgot to prepare the food,

like her sister asked her to do.

There's a brief moment of exasperation,
but she figures, "No big deal.

We'll swing by the store,
pick up some food,

maybe a bottle of champaigne
to sweeten the deal."

There's a bit of a rush now
as they get in the car

and drive to the store.

Luckily, there's a parking stall
right by the entrance.

And Jamie, with Jacob in tow,
steps into the lobby

and finds there's about a thousand
more people there than on any regular day.

She quickly zeroes in
on aisle 13, "Party Snacks,"

turns the corner and, all of a sudden,
hears a very loud crash.

Jamie spins around

and finds that Jacob
has knocked over a display shelf.

He's lying on the ground,
kicking and screaming,

and with his clenched fists,
is hitting himself repeatedly in the head.

It's only with the help
of two fully-grown men

that Jamie is able to wrestle Jacob
back into her car,

where she straps him in,
drives him home,

and spends the next three hours
trying to calm him down.

When he's finally settled,

Jamie collapses on the couch,
completely exhausted,

and could do nothing
but pray for the new year to be better.

Like one in every 68 children born today,
Jacob has an autism spectrum disorder.

Now, some of the traits of autism

can include things
like difficulties in communication,

difficulties in social interaction
and emotional awareness,

and hypersensitivities
to different noises, smells,

changes in routine,
and changes in environment.

And like the name suggests,
autism is in fact, a spectrum disorder,

and it covers a broad range of people,

from high-functioning,
highly intelligent individuals

to lower-functioning people
who have severe behaviors,

like the children and teenagers
that were at the care facility

my older sister worked at,
a couple of years ago back home.

Now, these kids exhibited
behaviors so severe

that their families had no other option
but to put them in facilities

for 24 hours a day, seven days a week,
and 365 days a year.

On that night,

just as Jamie and Jacob
were getting ready,

Jacob noticed that his mom
said a word under her breath,

something he only heard
her say once, 13 days ago,

when she hit her toe hard
against the kitchen table.

They step into the car,

and Jacob notices his mom
chose the wrong keys -

they scratch on the handle,

and don't work the first time
she tries to turn the ignition.

They drive towards his aunt's house,

They turn into the store,
which they never do.

They park by the entrance,
which they never do.

They usually park by the racks

so Jacob can count every shopping cart
on the way into the store.

They step into the lobby,

and Jacob counts 21 more people there
than on a regular Tuesday.

He hears a sound, a familiar sound,
but not a welcome one,

a squeaky wheel on the broken cart rack
the tall man is pushing around aisle 13

and ... Crash.

The reality is that Jamie and Jacob
see the world in very different ways.

Jamie sees the entire forest;

Jacob notices every single leaf

on every single branch
of every single tree in that forest.

Now autism, though, isn't something

that labels Jacob
as a problem to be solved.

He's a person.

He has his own strengths,
his own weaknesses, his own talents.

And like everybody,

he deserves to be treated
as a person to be understood.

How can we begin to understand?

In every single human brain,
there's a layer called the cortex,

and it sits at the top.

And it's responsible
for high-level thoughts.

So things like reasoning,
controlling impulses,

being able to understand
what someone else is thinking or feeling.

So if you think of any
regular day conversation,

for example, you're sitting at a table,
talking with a friend,

and her responses are all coming back
in sort of short, direct, grunted ...

And maybe that means
she doesn't like you any more,

or that she's had a long day,

that her boss has been on her case
about the big presentation coming up.

So instead of judging her short temper,

rather you listen attentively,
maybe make her a cup of tea.

That's quite a lot to infer
from just a series of grunts.

Now the cortex also helps
sort through all of the information

that we're constantly bombarded with
every single waking moment of the day.

As I'm standing here, and I have
this big shiny light on my face,

and this room has an unfamiliar
smell and sounds,

and some of you shuffling in your seats,

and a couple of people tweeting
up in the balcony.

(Laughter)

My cortex takes all this information
and it can process and it can sort

and it can categorize it all,
and it does that automatically.

That's great news because if it didn't,

if I had to sort through
all that consciously,

I wouldn't be speaking
very coherently right now,

and as a matter of fact,
I would not be standing here at all.

Now the brain of a person
who has autism

works a little differently.

It tends to be more detail-focused.

Now, this bottom-up approach

doesn't necessarily mean
that the cortex doesn't exist,

or plays no role at all.

But rather, the default setting
is to look at every single leaf

on every single branch
of every single tree

rather than the forest as a whole.

Being this detail-focused, though,
it can do some pretty amazing things,

whether that's replicating
an entire symphony

after hearing it only once,

publishing an applied mathematics paper
before the age of thirteen,

or sorting through thousands of lines
of code and identifying subtle errors

that help a company
make a product better.

It can also be overwhelming.

With these two drastically different
operating systems,

it can become easier to understand
how Jamie and Jacob

have difficulties seeing the world
through each other's eyes.

Doubtless, some of you here today

maybe know or have worked
with someone who has autism,

or maybe a child of yours
or one of your friends

has been diagnosed on the spectrum.

And you will know, and you really know,

how hard these parents and families work
to understand their kids.

Whether that's spending
$40,000 to $60,000

every single year
on non-medical costs alone -

so these are things not associated
with any sort of doctor's fees

or any sort of medications.

To put that in context,

that's over $56 billion
spent every year in North America alone.

And that's just a dollar figure,
and it goes way beyond that.

Parents and families are going to do
absolutely everything [so their kids]

can develop their strengths,
can work on their weaknesses,

can explore their talents.

Whether that's filling binders and binders
full of charts that track everything

from behavior management therapies,
to sleep quality, to diet;

whether that's lobbying school boards
to promote inclusiveness in the classroom;

or fighting changes in legislation
that cut funding to certain age groups;

or even doing like
a PhD's worth of research

to understand the broadening spectrum
of treatment options that are available.

And yet,

and yet experiences

like the one Jamie and Jacob
had at the store

still happen.

And yet these care facilities
like the ones my sister worked at

still exist.

Because, despite the amount
of effort and resources

that are poured into autism care,

there's still immense
challenges to overcome

to help further understanding
of autism spectrum disorders

and the people who live with it.

Despite my very best intentions,
I still think like an engineer.

That's probably because
five straight years

of post-secondary schooling
doesn't go away that easy,

but when my sister would come home
and talk about these kids

that she was working with,
I started looking.

And as it turns out,

there's ground-breaking research
being done all over the world,

that's investigating the relationship
between [autism and signals],

so these are things like heart rate,
skin temperature, perspiration,

and how they relate to actual
psychological and emotional changes

happening inside a person.

These body signals
are all given out automatically,

and even in the moments before
we consciously become aware of them.

How do we use this knowledge
and these concepts?

How do we generate an impact
for families like Jamie and Jacob's?

If you imagine for a moment, this year,

when Jamie and Jacob are getting ready
to go to the party again,

and Jamie forgets her snacks,

this time, Jacob is wearing a simple tool,
something with a few sensors on it,

and that's linked to an app
on Jamie's phone.

This time, as they step
into the busy lobby,

Jamie gets a notification

telling her that Jacob's
not feeling very well.

And they're able to step out of the store,

go through a relaxing breathing exercise,

and together complete their errands.

And this time, both Jamie and Jacob

are able to celebrate the New Year
with the people they love.

Thank you.

(Applause)