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