A new way to diagnose autism Ami Klin

I always wanted to become a walking on

the bar to a social engagement to to

resonate other people’s feelings

thoughts intentions motivations in the

act of being with them as a scientist I

always wanted to measure that residence

that sense of the other that happened so

quickly in a blink of an eye when to its

have the people’s feelings we know the

meaning of their actions even before

they happen we’re always in the stands

of being the object of somebody else’s

subjectivity we do that all the time

we just can’t shake it off it’s so

important that the very tools that we

use to understand ourselves to

understand the world around them is

shaped by that test we are we are social

to the core so my journey in autism

really started when I lived in a

residential unit for adults with autism

most of those individuals had spent most

of their lives in long state hospitals

this is a long time ago and for them

autism was devastating they had profound

intellectual disabilities they didn’t

talk but most of all they were

extraordinarily isolated from the world

around them from their environment and

from the people in fact at the time if

you walked into a school for individuals

of autism you hear a lot of noise plenty

of commotion actions people doing things

but they’re always doing things by

themselves so they may be looking at the

light in the ceiling or they may be

isolated in the corner or they might be

engaged in this repetitive movements in

self-stimulatory movements that let them

know we’re extremely extremely isolated

well now we know that autism is this

disruption the disruption of this

resonance

that I’m telling you these are survival

skills

these are survival skills that we

inherited over many many hundreds of

thousands of years of evolution

you see babies are born in a state of

other fragility without the caregiver

they wouldn’t survive so it stands to

reason that nature would endow them with

this mechanisms of survival they orient

to the caregiver from the first days and

weeks of life babies prefer to hear

human sounds rather than just sounds in

the environment they prefer to look at

people rather than at things and even as

they looking at people they look at

people’s eyes because the eye is the

window to the other person’s experiences

so much so that they even prefer to look

at people who are looking at them rather

than people who are looking away

well they oriented the caregiver they

can’t give a 6 to baby and is out of

this mutually reinforcing choreography

that a lot that is of importance to the

emergence of mind the social mind the

social brain the panel we always think

about autism as as something that

happens later on in life it doesn’t it

begins at the beginning of life as

babies engage with caregivers they soon

realize that um well there is something

in between the ears that is very

important is invisible you can’t see

that is really critical and that thing

is called attention and they learn soon

enough even before they can utter one

word that it can take that attention and

move somewhere in order to get things

they want they also learn to follow

other people’s gaze because whatever

people are looking at is what they’re

thinking about and soon enough they

start to learn about the meaning of

things because when somebody is looking

at something or somebody is pointing at

something then I’m just getting a

directional cue they are getting the

other person’s meaning of that thing the

attitude and soon enough they start

building this body of meanings but

meanings that were acquired within the

realm of social interaction those are

meanings that are acquired as part of

their share experiences with others well

this is a little 50 month old little

girl and she has autism and I am coming

so close to her that I’m maybe 2 inches

from her face and she’s quite oblivious

to me imagine if I did that to you and I

came 2 inches from your face you do

probably two things wouldn’t you you

would recoil you call the police you do

something because it’s virtually

impossible to penetrate somebody’s

physical space and not get that reaction

we do so remember intuitively

effortlessly this is our body wisdom is

not something that is mediated by a

language our body just knows that and

we’ve known that for a long time and

this is not something that happens to

humans only it happens to some of our

palliative cousins because if you’re a

monkey and you look at another monkey

and that monkey has a higher hierarchy

position than you and that is considered

to be a signal threat well you are not

going to be alive for long so something

that in other species our survival

mechanisms without them they wouldn’t

they wouldn’t basically live we bring

into the context of human beings and

this is what we need to simply act act

socially now she is oblivious to me and

I’m so close to her and you think hell

maybe she can see you maybe she can hear

you well a few minutes later she goes to

the corner of the room and she finds a

tiny little piece of candy an M&M so I

could not attract her attention but

something a thing did now most of us

make a big dichotomy between the world

of things and the world of people now

for this girl that division line is not

so clear and the world of people

is not attracting her as much as we

would like now remember that we learn a

great deal by sharing experiences now

what she is doing right now is that her

path of learning is diverging moment by

moment as she is isolating himself

further and further so we feel sometimes

that the brain is deterministic the

brain determines we were going to be but

in fact the brain also becomes we are

and at the same time that her behaviors

are taking away from the realm of social

interaction this is what’s happening

with their mind and this is what’s

happening with a brain well

autism is the most strongly genetic

condition of all developmental disorders

and it’s a brain disorder is a disorder

that begins much prior to the time that

the child is born we now know that there

is a very broad spectrum of autism there

are those individuals who are profoundly

intellectually disabled but there are

those that are gifted

now those individuals who don’t talk at

all there are those individuals who talk

too much there are those individuals

that if you observe them in their school

you see them running the periphery fence

of the school day if you let them to

those individuals who cannot stop coming

to you and trying to engage repeatedly

relentlessly

but often in an awkward fashion without

that immediate resonance well this is

much more prevalent than we thought at

the time when I started in this field we

thought that they were for individuals

of autism for 10,000 a very rare

condition well now we now it’s more like

1 in 100 there are millions of

individuals of autism all around the

societal cost of this condition is huge

in the US alone maybe 35 to 80 billion

dollars and you know what most of those

funds are associated with adolescents

and particularly adults who are severely

disabled individuals who need wraparound

services services that are very very

intensive and those services can cost in

excess of 60 to $80,000 a year

those are individuals who did not

benefit from early treatment because now

we know that what doesn’t create itself

as they diverge in that pathway of

learning that I mentioned to you were we

to be able to identify this condition

that at earlier point and intervene and

treat I can tell you and this has been

probably something that has changed my

life in the past ten years this notion

that we can absolutely attenuate this

condition also we have a window of

opportunity because the brain is

malleable for just so long and that

window of opportunity happens in the

first three years of life it’s not that

that window closes it doesn’t but it

diminishes considerably and yet the

median age of diagnosis in this country

is still about five years and in

disadvantaged populations the

populations that don’t have access to

clinical services rural populations

minorities the age of diagnosis is later

still which is almost as if I were to

tell you that we are condemning those

communities to have individuals of

autism

whose condition is going to be more

severe so I feel that we have a bio

ethical imperative the science is there

but no science is of relevance if it

doesn’t have an impact you see and we

just can’t afford that missed

opportunity because children reporters

and become adults with autism and we

feel that those things that we can do

for these children for those families

early on will have lifetime consequences

for the child for the family and for the

community at large so this is our view

of autism there are over a hundred genes

that are associated with autism in fact

we believe that there going to be

something between 300 and 600 genes

associated with autism and genetic

anomaly is much more than just genes and

we actually have a bit of a question

here because if there are so many

different causes of autism how do you go

from those liabilities to the actual

syndrome because people like myself

when we walk into a play room we

recognize the child does have a autism

so how do you go from multiple causes to

a syndrome that has some homogeneity and

the answer is what lies in between which

is development and in fact we are very

interested in those first two years of

life because those liabilities don’t

necessarily convert into autism autism

creates itself where we to be able to

intervene during those years of life we

might attenuate person and God knows

maybe even prevent for others so how do

we do that

how do we enter that feeling of

resonance how do we enter another

person’s being I remember when I

interacted with that 50 month older that

the things that came to my mind was how

do you how do you come into her world is

she thinking about me is she thinking

about that’ss well um it’s hard to do

that so we had to create the

technologies we had to basically step

inside a body we had to see the world

through her eyes and so in the past many

years we’ve been sort of building these

new technologies that are based on eye

tracking we can see moment by moment

what children are engaging with well

this is my colleague Warren Jones with

whom we’ve been building this methods

the studies for the past 12 years and

you see there I’m happy five-month older

it’s a five-month little boy who is

going to watch things that are brought

from his world his mom the caregiver but

also experiences that he would have were

he to be in his in his day care what we

want is to embrace that world and bring

it into our laboratory but in order for

us to do that we had to create this very

sophisticated measures measures of how

people how little babies how newborns

engage with the world moment by moment

what is important and what is not

well we created those measures and here

what you see is what we call a funnel of

attention you’re watching a video those

frames are separated by about a second

through the eyes of 35 typically

developing two-year-olds and we freeze

one frame and this is what the typical

children are doing in this scan pass in

green here are two-year-olds of autism

so on that frame the children who are

typical are watching this the emotional

expression of that little boy as he’s

fighting a little bit with the little

girl what are the children of autism

doing they are focusing on the revolving

door opening and shutting well I can

tell you that this divergence that

you’re seeing here doesn’t happen all in

our 5-minute experiments it happens

moment by moment in the real lives and

their minds are being formed and our

brains are being specialized in

something other than what is happening

with the typical peers well we took a

construct from our pediatrician friends

the concept of growth charts you know

when you take a child to the

pediatrician and so you have physical

height and weight what we decided they

were going to create growth charts of

social engagement and we saw children

from the time that they are born and

what you see here on the x-axis is 2 3 4

5 6 months and 9 until about the age of

24 months and this is the percent of

their viewing time that they’re focusing

on people’s eyes and this is their

growth chart they start over here they

love people’s eyes and it remains quite

stable it sort of goes up a little bit

in those initial months now let’s see

what’s happening with babies who became

autistic it’s something very different

it starts way up here but that it’s a

freefall it’s very much like they

brought into this world a reflex that

Orient’s them to people but he has no

traction

it’s almost as if that stimulus you you

are not exerting influence on what

happens as they navigate their daily

lives now we we thought that those data

were were so powerful in a way that we

wanted to see what happened in the first

six months of life because if you will

in turn if you interact with a two and a

three month older you be surprised by

how social those babies are and what we

see in the first six months of life is

that those two groups can be segregated

very easily and using this kinds of

measures and many others what we found

out is that our science could in fact

identify this condition early on we

didn’t have to wait for the behaviors of

autism to emerge and the second year of

life if we measure things that are

evolutionarily highly conserved and

developmentally very early emerging

things that are online from the first

weeks of life we could push the

detection of autism all the way to those

first months and that’s what we are

doing now now we can create the very

best technologies and the very best

methods to identify the children but

this would be for naught if we didn’t

have an impact on what happens in their

reality in the community now we want

those devices of course to be deployed

by those who are in the trenches our

colleagues the primary care physicians

who see every child and we need to

transform those technologies into

something that is going to add value to

their practice because they have to see

so many children and we want to do that

universally so that we don’t miss any

child but this would be immoral if we

also did not have an infrastructure for

intervention for treatment we need to be

able to work with the families to

support the families to manage those

first years with them we need to be able

to really go from Universal screening to

universal access to treatment because

those treatments are going to change

this children’s in those families lives

now when we think about what we can’t do

in those first years I I can tell you

having been in this field for so long

one feels really rejuvenated there is a

sense that the science the one worked on

can actually have an impact on reality’s

preventing in fact those experiences

that I really started in my journey in

this field I thought at the time that

this was an intractable condition no

longer we can do a great deal of things

and the idea is not to cure autism

that’s not the idea what we want is to

make sure that those individuals of

autism can be free from the devastating

consequences the comma beta times the

profound intellectual disabilities the

lack of language the profound profound

isolation we feel the individuals of

autism in fact have a very special

perspective on the world and we need

diversity and they can work extremely

well in some areas of strength

predictable situations situations that

can be defined because after all they

learn about the world almost like about

it rather than learning how to function

in it but this is a strength if you’re

working for example in technology and

there are those individuals who have

incredible artistic abilities we want

them to be free of that we want the next

generations of individuals of autism

will be able not only to express their

strengths but to fulfill their promise

well thank you for listening to me