Predicting Overload: Autism Spectrum Disorder - Paul Fijal (Transcript)

Here is the full transcript of Paul Fijal’s talk titled “Predicting Overload: Autism Spectrum Disorder” at TEDxEastVan conference.

Listen to the audio version here:

TRANSCRIPT:

Understanding Autism Through Jamie and Jacob’s Story

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 champagne 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.

The Spectrum of Autism

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.

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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 the ones that don’t quite work the first time she tries to turn the ignition. And they get into the car and drive towards his aunt’s house.

A Different Perspective

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.

Understanding and Empathy

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 anymore, 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.

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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.

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.

The Unique Mind

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.

The Journey of Understanding

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.

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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.

A Hopeful Future

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.

Predicting Overload: Autism Spectrum Disorder – Paul Fijal (Transcript)