Transcriber: Theresa Ranft
Reviewer: David DeRuwe We know that the Earth is round. Everything we understand about this planet is grounded in the fundamental assumption
that the Earth is round. But there was a time,
not all that long ago, when we knew that the Earth was flat. That's called a paradigm shift. Our basic assumptions
about the Earth changed because we had evidence showing
that our previous assumptions were wrong. Just like the shape of the Earth, there are assumptions about autism too. Most people understand autism
through medical assumptions. They understand autism
as a medical condition, a disorder, even as a tragedy. In the medical paradigm,
we're taught to believe that there's a correct way
to develop neurologically, that there's a right way for our brains
to work, the "normal" way, and that any other way
of developing is wrong and needs to be treated and fixed. In 2011, when I was 25 years old, I was diagnosed with autism, and it wasn't a tragedy. It was the best thing
that's ever happened to me. Finding out that I'm autistic brought me
an overwhelming sense of relief. My whole life, up to that point,
finally made sense. My paradigm about myself shifted. I wasn't a failed neurotypical person. I was a perfectly good autistic person. After my diagnosis, I did what most of us would probably do, I went to Dr. Google, (Laughter) and I started researching autism. Eventually, I upgraded from Dr. Google. I did my Ph.D. in autism, became a doctor myself, and today, I'm proud to be one of a growing number
of openly autistic people working in autism research. But, in those early days, I wasn't running
a complex research project, I was just trying
to learn more about myself. And learn about myself, I did. I was bombarded with information. I was bombarded with information
about my deficits. Autism causes deficits
in social interaction, deficits in communication, restricted and repetitive behaviors, sensory processing deficits. For me, that information
just didn't make sense. Finding out that I'm autistic had completely changed
my life for the better. How could something
that was so positive for me be such a bad thing? So, I went back to Dr. Google, but this time I dug deeper. I started to find information about autism that was written, not by researchers
or other professionals, but by actual autistic people. I discovered a thing called
the "neurodiversity paradigm." The neurodiversity paradigm is an alternative way
of thinking about autism. It describes autism as a part
of the range of natural variation in human neurological development. At its very simplest,
autism is a different way of thinking. Just like biodiversity helps to create a healthy and sustainable
physical environment, neurodiversity can help to create a healthy and sustainable
cognitive environment. According to the neurodiversity paradigm, there are no right or wrong brains. All forms of neurological development are equally valid and equally valuable. And regardless of what type
of brain you've got, all people are entitled to full
and equal human rights and to be treated
with dignity and respect. Now, that sounds a bit
like a panacea, I know. Treating people
with dignity and respect ... it just makes sense. You might be surprised, then, to learn that a pretty common way
of reacting to this idea is ... "I don't know, I mean, it's alright for you, but it doesn't apply to everybody. What about this person? They're really autistic. They're not just different; they're disabled." Well, maybe you can't tell
just by looking at me, but I'm disabled too. I'm not disabled by my autism, though; I'm disabled by my environment. This is another paradigm shift. The way that we're used
to thinking about disability is based on a model called
the medical model of disability. The medical model assumes
that disability is an individual problem. It places disability
within the disabled person, within me. For example, I really struggle
with shopping malls. They're loud, they're brightly lit, they're unpredictable,
they're full of people. The medical model would say
that I struggle with shopping malls because there's a problem with the way
that my brain processes that input because I'm autistic. But there's another way
to think about disability. It's called the "social model
of disability." In the social model, disability happens when a person's environment doesn't cater
for their individual characteristics. In the social model, we don't refer to people
with a disability. Disability isn't something
that I carry around like luggage. Instead, we use the word
"disabled" as a verb. Disability is something
that's being done to me. I'm actively being "dis-abled" by the society around me. When I go to a shopping mall, I don't struggle because
there's something wrong with me; I struggle because the shopping mall is designed in a way
that doesn't cater to my needs. If we started designing shopping malls
that were quiet, dimly lit, predictable, and sparsely populated, well, I'd still be autistic, but I might not be disabled
by shopping malls anymore. Almost everything we know about autism stems from research that's based
in medical assumptions and the medical paradigm. We spend hundreds of millions
of dollars, globally, every year on autism research. And the vast majority of that research
conceptualizes autism as a problem. Recently, I conducted a study examining how autism research funding
has been invested in Australia over the past 10 years. Here's what I found. More than 40% of funding
went to genetic and biological research, trying to find out why
autistic people are the way we are and if there's a way to prevent it. Another 20% of funding went to research
investigating treatments for autism, most of which are trying to find new ways to make autistic people
just act a bit less weird. Only 7% of funding went to research investigating services
to help autistic people. Why does this matter? Well, around 1 in 50 people are autistic. About 60% of autistic adults
are under- or unemployed. 87% of us have mental illness. Autistic people are nine times more likely
than the general population to die by suicide. We have an average
life expectancy of just 54 years. And we deserve better. In 2012, an autistic researcher
named Dr. Damian Milton proposed a new theory. He called it the "double empathy problem." And what he suggested was this: maybe autistic people
don't actually have social deficits. Maybe we just get along better
with other people who think like us. Maybe autistic people socialize better
with other autistic people and non-autistic people socialize better
with other non-autistic people. Maybe the difficulties
that we see when autistic and non-autistic people try to socialize aren't because the autistic person
has social deficits, but because autistic
and non-autistic people are both bad at communicating
in ways that make sense to the other. Now, to the autistic community, this made perfect sense. But a lot of autism researchers
weren't so keen. I guess maybe they didn't like the idea that the whole history of autism research
could be based on flawed assumptions. Luckily, in the last couple of years, a handful of autism researchers
have jumped on board with the double empathy problem, and they've decided
to test it scientifically. In one brand-new study
by Dr. Catherine Crompton from the University of Edinburgh, they did this using a task
called a "diffusion chain," which, in Australia, we know
by the slightly politically incorrect name of Chinese Whispers. Now, I'm sure you're all familiar with it. You whisper a piece of information
around a group of people, one by one, and you try to keep it
as accurate as possible. And if you've played, you know
that the accuracy part is pretty hard. The first person will whisper
a perfectly innocent sentence like, "Today I need to pay my rent
and get new tires." But by the last person: "Donald Trump is President,
and the world's on fire." (Laughter) Well, in Edinburgh, they played that game
with three groups of participants. The first group was all autistic people. The second group was all non-autistic,
or neurotypical people. And the third group was a combination
of autistic and neurotypical people. The researchers found that the all autistic
and all neurotypical groups were equally accurate
in their information sharing, but the combined autistic
and neurotypical group was significantly
less accurate and less clear in their information sharing. That suggests that autistic
and non-autistic people communicate equally well. It's the mismatch between
those communication styles that causes the problems, exactly as the double empathy
problem predicts. We need a paradigm shift in the way
that we think about autism. We need to recognize
that maybe "acting less weird" is not the best outcome
for an autistic person. We need services and supports that will help us to live long,
happy, and fulfilling lives while respecting our right
to be authentically autistic. And we need the kind of work that I do: research led by autistic people that answers the questions
autistic people want answered. Because the Earth is not flat, and I am not a tragedy. Thank you. (Applause)
What's her shirt say?
She’s dropping a lot of truth bombs.