Science Knight Out | Laura Lee McIntyre – A Spectrum of Promise


Hey, good evening everybody. We welcome
you here this evening for the second Science Knight out and we’re very
grateful that you’re here. I want to talk to you a little bit about what we’re
planning on doing. So this is going to be a regular series, we’ll probably do it a
couple of times a year so look for something in the late winter, the spring
for another session out and our intent here is to bring sort of the, the science
that’s going on at the U of O out into the community and have a community
oriented dialogue, and I really am hoping that we’re going to, to make it a night
out so not only will we be focusing on specific topics but we’re gonna try and
engage in conversation and tell a little bit more of science stories as we go
along throughout the evening. So tonight our guest is Laura Lee McIntyre
and I’ll be introducing her in just a minute. There’s two things that I want to do ahead of time, the first is just to remind you of
what the Knight Campus is. So the Knight Campus is something that
President Michael Schill announced just about a little bit more than a year ago.
It’s a 1 billion dollar new initiative at the University of Oregon and the
intent is really all tied up in what we’re doing here this evening and that’s
to bring the work that goes on at the university out into the world and to really have an impact
and so to complete what we call the impact cycle, which is to not only do research and then publish it in papers, but turn it into new treatments, new policies, new ways of doing things
that are going to change the world. And so, one of the exciting things that I’ve been
working on over the last year is to figure out a new building that we’re going to have for the Knight Campus. It’s going to be just on the north side of Franklin Boulevard, right across from the main campus. And so we just unveiled this, our building plans,
just about two weeks ago and we made a little video so I thought we’d start by
showing you that video just so you can see what’s going on there. The Knight campus is a way for the
University of Oregon to affect the world. And now with these architectural renderings,
that vision is becoming a reality. It works visually yes, but it also begins to set
an identity for this mission which looks beyond what we’ve known
before in a building. This building symbolizes an immense
amount of ambition to do more and to do more in one great strike. This design is meant to be something truly innovative,
something really different and special. Something that will capture the spirit of basic
discovery in Oregon and the spirit of wanting to do something for society. The Knight campus to me symbolizes excitement. The fact that there’s a place to nurture these ideas that could really change the way that we see the world. It’s a highly interactive space. The faculty be right there with their
students and really energize conversations. For a lot of us who do work at the
boundary between fields, we know that just talking to people is
extremely important. This building will transform our University. All right, so if the music didn’t
convince you we’re very excited about this, so, ah, so it’s, it’s gonna be a great thing
just two years from now you’ll, ah, you’ll see it in its entirety, we’ll start
breaking ground in February and then you’ll start seeing a giant
hole on the ground in the late spring, and then, miraculously, the buildings will
emerge from there. So it’s going to be a great addition to Eugene and to the
University of Oregon and we think that it’s just the beginning of some of the impacts that we’re going to be having as we move forward. So the mission of the Knight Campus is science advancing society, and and, um, that’s really going to be our theme
for all of these sessions that we have. So what I wanted to do is
start off by just telling a little story. So I’d like to to share as we as we do
these things, just little nuggets of exciting things that are going on in science in the world and then we’ll have our guest speaker, and then following that then we’ll have a chance to have a discussion with the speaker to find out a little bit more about
what they’re talking about. So the story that I wanted to start telling about I think is just one of the most amazing things that has been going on in the world in the last ten years, and just really over the last couple of years
we’re finding out. And so this is a cave, it’s a dramatic event so there’s a cave in Western Siberia, so even more
exciting, and this this cave is called the Denisovan Cave, and it’s called the
Denisovan Cave because it’s named after a hermit who lived there named Dennis,
and so it sort of sounds like the beginning of a Monty Python skit. The
hermit named Dennis lived here, but it actually turns out to be quite a profound
location, because in 2008 some archaeologists went into this cave and
they found something, and the thing they found is not the hand, it’s the little bone,
this little pinky bone there. Now think of all the detr- detritus that
you’ve gone through as a child sifting rocks through your fingers.
In all of that vastness of the, the earth and the planet, these guys found this, this little, tiny bone,
and this bone, it turns out, is providing profound insights and to
who we are as humans. And I find this quite remarkable.
Okay, and how is that even possible? It’s because we can actually, even though this bone is
tens of thousands of years old, we can actually extract the DNA from it,
and then see who is this bone from. And what we found, is that the, the bone is
actually from a race of humans, or humanoids, that we didn’t even know existed.
So this is the only evidence that we have of this group. And so this people is called the Denisovans,
and so they are an ancient hominid group, and, the, you probably have heard it there, the other group that was living around the same time, Neanderthals. So Denisovans lived in the in the central part of Russia, Neanderthals lived in northern Europe, and then we have what were essentially,
anatomically modern humans were living in Africa, and then the, uh, the people that became us moved out of Africa, and then moved into Europe, and then across Asia,
and up through here into the new world. And so something remarkable happened.
Well, maybe it’s not remarkable, I think it’s actually, perhaps the most
normal thing in the world, these individuals had sex. Okay, so this is
something that we didn’t know until recently, not the sex part, but that it was with
Neanderthals, and so ah, so the, the Neanderthals and the, the humans from Africa were having sex, and we had some inkling of that recently, but also, it turns out that some of the humans that encountered the Denisovans also had
children, and the Neanderthals also had children at the Denisovans, and vice-versa. So it’s a whole mixed pot of of ancestry here. But interestingly, what we have is that
people of African descent have no Neanderthal or Denisovan
DNA because that’s not where they’re from. Europeans have Neanderthal DNA, and then Asians have Denisovans DNA in there, just a little bit. Actually people in Aboriginal Australians have about a 4 or 5 percent of their DNA is from Denisovans. And so, they have the largest part of the
world, so that’s quite remarkable I think. And so when we look at the family tree
of humans, we see that here are sort of modern humans that came out of Africa, and we see that there is a lot of genetic exchange between them, and so we have Neanderthals and Denisovans all crossing together, Okay. And so, another remarkable thing about this, is that we have a whole race of people that’s only
known from their DNA and the remnants of their DNA in us, Okay, and they’re named after a hermit named Dennis, which I think is remarkable. And there’s some other ancient
humans that we see evidence for lurking in the genomes of some of these
individuals, so I think over the next few years we’ll keep making more and more discoveries about these ancient individuals. Now I think this is just fascinating,
this is a great science story, but the story is getting richer
all the time, and part of that is because we can now sequence modern humans and
then we have the many samples now Neanderthals in particular, and we can
sequence them and we can ask which genes did they have and which genes did
we inherit and retain as modern humans. And it turns out that when people have
started looking at the genes that map onto specific diseases, frequently we
find that the variations that lead to an increased likelihood of the disease,
actually come from the Neanderthals. So these are some diseases
that have a greater propensity to occur if you have a Neanderthal variation at
those sites in your genome, so things like sensitivity malnutrition, some heart
diseases, and things like depression, and addiction to tobacco.
So part of who we are if you’re European, or Asian, is dependent on who your
great-great-great-great-great-great- ancestors had sex with a long time ago,
and I find this quite fascinating. Now as far as we know, you know addiction to tobacco in Neanderthals isn’t because the Neanderthals were smoking tobacco,
that’s a new world product, I think they had a preference for cannabis, actually, but um, but the, but this is, this is who we are now as humans, and to some extent.
So this is a piece of art called Mr. 4%. So most Europeans have around 2 to 4
percent Neanderthal DNA in them and so part of what we are, and this now relates to the to the rest of the theme that we’ll be talking about, is we’re kind of a people out of place and out of time. We’re evolved and our genes are made for
a certain way of living and society continues to change rapidly, and so
things like depression, and addictions, response to food, and nutrition, the over
overabundance of food, those kinds of things, are all relationships that involve who we are physiologically, biologically, and then our societal context,
and so that’s an important part of what we’re doing and I think Laura
Lee won’t be specifically talking about these themes but I think it’s all related to the
kinds of things we’re talking about. So I just want to share
that story because I just think it’s amazing that we’re discovering this
thing from little bones here and there and learning profound things about who
we are as humans. So I want to now turn to Laura Lee’s talk. The way this is going to work,
I’m just putting up this number, is at the end we’ll have a chance
to do a question and answer period, but we’ll do it via text because I’m going
to be the one having the discussion so you’ll be texting me your question. So
we’ll, we’ll show this number again at the end. But let me now turn to introducing Laura Lee,
and I have her dossier on a piece of paper here, so I want to make sure I don’t forget anything. So Laura Lee McIntyre is a
professor of the School of Psychology in the College of Education at the
University of Oregon. She’s also the department head for
special education and clinical sciences. She’s also a member of the prevention
Science Institute where she’s associate director of Child and Family Center, and Laura Lee spent her early life in Riverside
California, she’s a graduate of La Sierra University and UC Riverside where she
received her PhD. Laura Lee actually began her academic career at Syracuse
University but moved to the University of Oregon in 2009 and we are very happy
that she did that. She’s [with] won many awards and honors
that I won’t go over all of them, but she’s a fellow an early career award
winner from the American Association on intellectual and developmental
disabilities, a fellow of the American Psychological Association, and recipient
of the fund for faculty excellence at the, at the University of Oregon. And
perhaps most notably, recently she was appointed to the University of Oregon
Board of Trustees by Governor Brown, so that’s one thing about Laura Lee as she
has a great service to the University of Oregon. So as you’ll hear Dr. McIntyre’s
work is really distinguished, not only for her care and attention that she pays
to children with disabilities, but also the recognition that, of the challenges that
are faced by families. I know many people in this audience are facing those challenges.
And so not only it’s the attention to children, but the the broader support systems and how we should be approaching all of these
disabilities in order to make the lives of the children and their families the
best lives that they can be. And so with that, I invite you to welcome
Laura Lee McIntyre to the stage. I remember many, many Thanksgiving
dinners growing up. I could smell my mother’s cooking
wafting through the house, and everything about the holidays, this is actually a perfect time to have this talk, everything about the holidays was magical.
The family, the friends, the good times, the opportunities to get together and share those simple moments that we can all be thankful for. Those things that were so special to me, were a
challenge for my cousin. The holidays were not for Mindy. All of the things that I cherish:
the opportunities to engage socially, to enjoy new foods, we didn’t eat turkey and dressing and cranberry sauce everyday. Foods, those were a challenge for my cousin, The novel environments, the opportunities to flex
her social communication skills, which were underdeveloped, was a challenge. Sometimes Mindy would just sit in a corner and sort of keep to herself, and other times she would have excruciating meltdowns, and that just broke my heart and I knew it
was difficult for my aunt and uncle. I became interested in developmental disabilities before I even knew what developmental
disabilities were. But of course, now I know that autism is a Neurodevelopmental disorder. A brain disorder that affects 1 in 68 children. Those children grow up to be adults.
Those adults are in our community. Sometimes attending our colleges and universities.
Living next door to us in our neighborhoods. I noticed the challenges very early on
because of my cousin, and that really put me on a path to really investigate the
family experiences and the experiences of people with disabilities. And I didn’t
know that at the time but I was really compelled to pursue that on a scientific
level. Of course I know that autism is a social communication disability
marked by deficits in communication. Social skills don’t often come easily or
naturally for these individuals, but it’s often the problem behaviors, the challenging
behaviors, that can be so debilitating that can interfere with these children’s ability
to be included in regular education settings. To be included on the playground,
to be included at the lunch table, to be included, and playdates, to be included, period, full stop. It’s these behavior problems that can
also be so stressful to parents, to caregivers, and i saw this with my aunt and uncle: The ups and downs, the emotional kind of heartbreak that they experienced and we as a family experienced. Of course some children’s problem
behaviors are extreme, and after i received my PhDa took a postdoc at the Kennedy Krieger Institute at
Johns Hopkins University, and I was on an inpatient unit, the neurobehavioral unit, and in this 16 bed hospital unit, we were charged with the treatment of severe challenging behaviors and I remember one little girl that came to us with a detached retina. A detached retina because she had had gauged in such challenging problem behavior. Now fortunately not all children engage in such high levels of challenging behavior, but that shit is real people, it happens. We know that children with autism and
other developmental disabilities are 3 to 5 times more likely to
develop a chronic illness. I cut out over here, that’s interesting.
I’m going to modify my behavior and stay right here. These children are 3 to 5 times more likely
to develop a psychiatric illness, or a severe challenging behavior relative
to their typically developing counterparts An epidemiological studies suggest that the onset is sometime in adolescence in that transition to to adulthood. However, we know, we as people in the field, as caregivers, as people interested in this, know that those problems can emerge much, much earlier than adolescence and much, much earlier than the transition to adulthood, although that might be a particularly tumultuous time and changes developmentally, and so on that could exacerbate some of these existing behavioral problems. But we know these occur, these problems occur earlier. This graph here shows a sample of 200 children
who were 3. 3 years old.
Now I have two kids, they’re older than 3, but I can remember when they were
3 not too long ago. 3 year old children.
3 year old children have behavior problems. We call it the terrible twos and threes for a reason.
But relative to typically developing children, children with developmental delays already at age 3 are demonstrating more behavior problems. So here we see an elevation in total problem behaviors, an elevation in internalizing behaviors. So these are things like anxiety and depression and this is in three-year-old children. And we also see elevations and externalizing behavior. So the aggression, the disruption, the tantrums, the major out.
And these are the things that interfere with one’s ability to really access that
quality of life that we’re all after. I went to graduate school thinking that I
wanted to be a teacher. I was going to be a special education teacher and I was
going to work with children one-on-one and make a difference that way. I got bit by the research bug, and I got bit hard, and I have the mark to show for it. I fell in love with making an impact on a different level. So rather than working with individual children
one-on-one, or in a classroom context, I was really interested in examining, kind of from a broader perspective, the family experiences and the developmental onset of some of these
behavioral problems that I had observed in Mindy, my cousin, and had observed
sort of vicariously through listening and talking to my aunt and uncle. So I worked with Bruce Baker at UCLA, and
Keith Crnic at Penn State, and Jan Blacher at UC Riverside, and Frank Gresham at UC Riverside and I was part of a multi-site study that actually tracked the onset of some of these
behavior problems in very young children. With an eye toward looking at family properties
and family systems that may be implicated in the development of some
of these adaptive behaviors as well as some of the maladaptive behaviors that I
spoke of. When I first started out my academic career, so Patrick told you I was at another university before I came to Oregon, although my blood is green and
yellow, I’m pretty sure, but when I first started this line of work, I wanted to do
interventions to promote the well-being of family members specifically, and to promote behavioral health and well-being of children. And I scoured the literature
and I looked for things that were evidence-based and I actually didn’t
find too many things focused on families of children with developmental disabilities. I had a colleague at the University of Washington, Carolyn Webster Stratton who had developed a program called “The Incredible Years parent training series.” Very well researched evidence-based program for treating conduct disorder. Now you might say well what does conduct disorder have to do with autism? Well it’s a good question. I’m not sure if I have the answer actually. But children with autism and other developmental disabilities are at increased risk for developing some of the same behavior problems. So I set to refine, modify, tailor, and test the Incredible Years parent training program
that I had developed for parents with developmental disabilities and when I
started out I had a team of 4 people I had 4 remarkable, very strong women
who worked side-by-side with me, making the modifications and testing out the
interventions and let me tell you a little bit about these students because
they’re remarkable they’ve all graduated and gone on to their own research careers. Nicole Quintero is a faculty member at
Rush Medical University, Florence DiGennaro Reed as a faculty member at the University of Kansas, Leah Welchons as chief psychologist at the Kelberman Autism Center, and Leah Brzuszkiewkz-Phaneuf, try to say that ten times fast, I can’t, glad I said it once, Leah Brzuszkiewkz-Phaneuf is a faculty member
at SUNY Upstate Medical University. These four remarkable women rolled up their sleeves and worked with me to develop the
modifications to this program. Let me tell you a little bit about the program.
It’s not rocket science. Actually, if it were rocket science I probably
wouldn’t be in this line of work, but it’s intervention focused on parenting.
So my idea was that the magic, a magical ingredient that promotes optimal
behavioral health, is the parent-child relationship. And that’s not a new idea,
and I can’t claim to sort of take ownership of that idea, but the idea that
parent-child relationships matter really speaks to me as a teacher as an early
interventionist. Parent-child relationships matter. Relationships with early intervention providers matter. Anyone who has that tried and true
babysitter that they rely on and hopefully she’s taking good care of my
kids right now, we know that that relationship matters. And so really the
target of the intervention is on improving the relationship, the
parent-child relation, and we do this through focusing on positive parenting
strategies, reducing some of the negative coercive strategies, teaching positive
discipline, and that sounds like good parenting, right? And we made
modifications to focus specifically on the needs of kids with autism and other
developmental disabilities. Thinking about their communication styles.
Thinking about taking opportunities to teach through play. Thinking about the function
or the communicative intent of the challenging behavior. So rather than
trying to suppress a behavior we really sought to understand why that
behavior continues to occur. What is reinforcing about that behavior
rather than just suppressing it. We tested this intervention in a randomized controlled
trial and we collected information from parents in their home settings. We got
surveys, we did videotaped observations, and actually, this was a few years ago
when we didn’t have these tiny digital cameras, and we didn’t have video
recording on our phones, so literally my research assistants hoisted a camcorder.
Remember, it’s not too long ago, hoist- hoisted a camcorder on their shoulder
and took these videotaped observations of parents interacting with their children in
naturalistic family contexts. And what we found was that relative to our control condition, our control condition receives
sort of treatment as usual, intervention and services in the community as usual.
We found that our intervention group, so our interventions were comprised of
eight to twelve caregivers that met weekly for 12 weeks. We followed this
curriculum that I described, we saw noticeable reductions in these
observations and we coded 30 second partial interval codes looking at the
presence, or absence of particular behaviors, and we noted what we’re
calling less effective, or ineffective parenting strategies relative to more
optimal, or positive parenting strategies. So we see nice reduction in our
treatment condition. Now it’s really striking about this is, we had naive
observers code, not naive like not knowledgeable, but naive, blind to conditions.
The research assistants didn’t know who was in the treatment condition,
and they didn’t know who was in the control condition. They didn’t know if it
was pre- or post- intervention. So it provides a more rigorous or more valid
test of treatment effectiveness. I’d be, “Well that’s great parents are changing
their parenting strategies, but aren’t you interested in reducing challenging
behavior among the children?” The hypothesis was parent-child
relationships were actually the mechanism, or implicated in sort of the
development of more adaptive and less adaptive strategies, so ultimately we were interested
in modifying child problem behavior. And what we see here, is a similar pattern.
So relative to our control condition the children who are in our treatment condition, and mind you, the children did not receive any
intervention themselves, the intervention was targeting parents, and the
parent-child relationship, the children showed fewer problem behaviors post intervention and this is a significant group by time interaction. Now we were very excited about these results. They were fairly revolutionary at the time.
There are other people doing this work now, but at the time it was brand new. Finding answers was what kept me up at night, was that we were able to change parent-child interactions, improve the effectiveness of the parent-child interactions, indeed
improve the child problem behaviors, but we couldn’t touch parenting stress. Anyone who’s a parent knows,
parenting is stressful, right? It’s not for everyone. Anyone can be a parent, it’s not for everyone. We couldn’t touch parenting stress,
so we measured stress. We measured maternal depression, and we could not
intervene and reduce heightened stress parents were reporting. I didn’t- I don’t
like this microphone. I didn’t like that finding, and so I got to thinking, well,
why is it that we can’t reduce parenting stress? Well, we didn’t target parenting stress, we targeted parent-child relationships,
and the idea was that if we improve child behavior that parents would feel less stressed,
but that actually didn’t pan out in our data. So, I scratched my head,
went back to the drawing board and started working with a colleague of mine
in Southern California, Dr. Cameron Neece who’s an expert on stress reduction. And
she has been running mindfulness based stress reduction interventions for
parents of children with autism and other developmental disabilities for a
number of years. And we got together and we wrote a grant application and the idea behind this proposal was that if we could target stress directly, that parents might
be better able to uptake the intervention, the behavioral skills training interventions.
So first we target the stress, then we improve the parenting
and we see the collateral effects on child behavior, right? Seemed great, and I H
liked it, we’re very excited about this idea. First we target the stress, and our preliminary work does demonstrate that when parents
of children with autism and other developmental disabilities receive a
mindfulness based stress reduction, so this is a 6-week intervention to
reduce stress by increasing one’s mindful awareness of their time and
space to increase their acceptance and to sort of, um, accept and engage in self
love and accept their child. It’s not a targeted intervention that focuses on
the children at all, it is simply designed to increase mindful awareness,
reduce emotional reactivity, and indeed we see nice reductions on parents
reports of stress and depression. So here we see relative to a control group and the
control group, our parents of children with autism and other developmental
disabilities. Those in our treatment condition report less stress and less
depression after receiving this mindfulness mindfulness based stress
reduction. Now we’re very excited about layering on several different
interventions to optimize parenting, improve mental health for caregivers, as
well as for children themselves Now my lab has grown over the years so I
mentioned those four-star doctoral students, now I have 18 star doctoral
students and I hope some of you are in this room I can’t see you, so when I see
you on Friday at Docs AM, you can just say that you were there. Start texting
your friends right now, there will be a quiz. I now have 18 doctoral students and
what we were able to do with such a large team is really engage in
community-based interventions that involve a large group of people power,
for lack of a better word, so I have wonderful graduate assistants who are assisting me with this research in every step of the way. I also have wonderful colleagues, and I see one of them in the front row there, hello Beth Stormshak. Who have really challenged my thinking
and I think this is what good colleagues do. You challenge your thinking, you
challenge approaches, and in sort of collaborative laboratories you’re able
to sort of riff off of one another and hopefully riff with one another. And so
in thinking about refining intervention approaches designing interventions that
are both feasible and cost effective and can be used with a range of families,
including those with autism and other developmental disabilities, I’ve had an
opportunity to work with the family checkup. Beth Stormshak and Tom Dishion
developed the family checkup, which is a strength based intervention that’s brief.
So this is the beauty of it, it’s a brief intervention and it’s tailored to family
strengths and priorities and needs. Right now we’re up, well not right now,
right now, we’re here in Eugene, but we’re up in the Portland area in five elementary
schools in the North Clackamas School District. And we are recruiting incoming
kindergarten students and using the family checkup, making some modifications
to this intervention approach for families who have children with autism
and other developmental disabilities. Many of these children are in general
education classrooms and teachers are struggling with how to best support them. What we’re seeing here with some of our findings is although the intervention
itself focuses on parents, this is a parenting, a family-centered intervention,
teachers who are also blind to conditions, so similar to my other work
where individual coders are sort of blind to treatment condition, teachers
are reporting fewer emotional and behavioral problems in those children
who those parents of children who receive the family checkup, our
intervention relative to our control group. So we’re developing a substantial
body of work demonstrating that when we intervene with families. When we focus on
parenting, not only do we see collateral effects across different behaviors and
contexts and settings, but teachers are reporting that children are doing better
in school. This slide shows behavioral and
emotional symptoms, but we see similar findings for academic outcomes. You all know that if you’re not doing so well emotionally and behaviorally, it’s
hard to focus on anything else. And so we’re seeing nice associations with
emotional and behavioral health, with academic performance, things that
teachers care about, things that principals and school districts and
policy makers care about. They care about test scores, they care about achievement, and any teachers of their kids probably care about their own children’s achievement. Now we’re developing the substantial body of evidence suggesting that interventions
are working, but our interventions are only as good as our ability to detect
who may be at risk, or who may be in need of these interventions. So I’m going to take sort of a slight left turn here and think about how we identify children in
need of support, be it because they have a developmental risk factor, or another risk factor. How do we best identify who might be in need? And I have to talk a little bit about the good work
coming out of the College of Education. So my colleagues Jane Squires and Diane Bricker develop the ages and stages questionnaire. If you have a child who has seen a primary care physician in the state of Oregon, chances
are you filled out ages and stages questionnaire. This developmental screen is ubiquitous. When I was in New York I was filling out ages and stages
questionnaires, it’s not just an Oregon thing. It’s been translated into many
languages, it’s used across the globe, but it’s really saturated in developmental
and primary care pediatricians office here in the state of Oregon.
It’s a wonderful measure, it’s a self-report parents report on the child’s
development. Parents are great. However, self-reporting relies on parents ability
to articulate the needs and concerns that they have about their children, and
self reports are reliant on having physicians or other caregivers, listen and receive, digest and process that information. You can imagine that there are a number of implicit and explicit biases that are present in the medical system. I see Randy Phelps out there
developmental pediatrician at the CDRC. He does lots of comprehensive evaluations. If your child sees Randy Phelps, your child will have a good, comprehensive evaluation. So Dr. Phelps does not have any of these
implicit and explicit biases, I promise. However, if you’re human like I am, you
may have some of these implicit and explicit biases. So a physician
might say, Oh this is a girl. Girls don’t have autism, this is, this is the
disorder in boys. Boys are 4 to 8 times more likely to have autism. That
doesn’t mean that boys, only boys, have autism. Or this is a person whose first language is not English. Or this is a person from an impoverished background.
Or this is a person who doesn’t have access to primary care, you name it.
The list goes on and on. So there may be social, cultural, political factors that
interfere with our ability to detect developmental differences. What if we could identify ways that didn’t
rely on parents self-report. That didn’t rely on physicians evaluations
or appraisals and I’m not suggesting we work Dr. Phelps
out of a job, you will always have a job, Randy. But what if we were able to
detect differences before we even saw social communication difficulties. My present work involves a collaboration with Fred Sabb, who’s the director of the
Lewis Center for neuroimaging here at the U-of-O, and Damien Fair, who’s a
neuroscientist up at OHSU, and we’re evaluating networks in the brain that
may show differences in brain functioning. So we are looking at fMRI
resting-state networks to determine whether there are differences in some of
these networks that have been relatively well explored in typically developing
children and adults and under investigated in more vulnerable clinical
populations like those children with autism and developmental delays So here, this graphic just shows that there are a number of different ways toward
developing a model of shared and disparate neurobiological etiology. So we’re interested in determining whether there are some clues as to what causes, or what are the underlying causes that are implicated in things like autism, or other neurobiological, neurodevelopmental disorders. So here at the brain level we’re looking at different functional connectivity,
resting-state networks at the behavioral level, of course we look at sort of our
behavioral phenotypes, internalizing and externalizing, and of course we’re
interested – I’m in a College of Education, I’m interested in school performance I’m
I’m interested in outcomes. But here, if we look sort of at the brain level, we
may potentially have clues as to brain signatures that may vary across
different diagnostic subgroups. At the gene expression level there are a number
of people, several colleagues up at OHSU that are attempting to identify candidate genes implicated in the etiology of autism So this just shows kind of a
graphic of the varying levels of scientific inquiry, and my point here is
that we need all hands on deck. So as we think about addressing a complex problem,
like autism. Causes, treatments, supports. We need investigation at every level of scientific inquiry. And my little plug for the Knight Campus is that we actually could develop a space where all levels of scientific inquiry are coordinated
and that the strengths of a certain disciplinary area can magnify the
strengths of another disciplinary area. Such that we could do more than we could
in our individual labs. It’s very Gestalts. The sum is greater,
the whole is greater than the sum of our parts. I’d like to end with a very
promising study that has the potential to revolutionize our knowledge of autism. So colleagues at OHSU, but actually indeed colleagues from across the
country, are engaged in the largest study of autism that has ever been conducted. So the study is called spark. The goal is funded by the Simons Foundation and the
goal is to recruit 50,000 trios. What’s a trio? An individual with autism and their
biological mother and father. To understand, both at a genetic level, gene
expression at a clinical level, behavior, and attempting to understand genes that
are related to the wide heterogeneity of phenotypic expression. What does that mean? Well, in autism it’s a spectrum disorder and we recognize that children
and adults can be very low functioning and have significant levels of
intellectual impairment and others can be very high functioning and demonstrate high IQ, be
gifted, and have sort of intact or enhanced cognitive functioning. It is a
very heterogeneous neurodevelopmental disorder. And so the goal here is to understand
at a basic genetic level, how we account for this phenotypic
heterogeneity and to identify specific genes that may be implicated in the
disorder. We know genes are involved, we just don’t know which ones, we have some
clues. There are 22 sites across the country, and we have an Oregon site that’s being led by Brian O’Roak, who’s a geneticist ,and Eric Fombonne, who’s an epidemiologist and a child psychiatrist. And the goal is to combine forces and put together a repository of information of data that
can then be used for further study to help elucidate both the causes, as well
as the potential interventions, so that we can detect very early on who may be
at risk, course-correct, and better understand the underlying cause. I thought for a long time that we don’t have autism spectrum disorder, that we
have autism spectrum disorders. It is likely a number of different causes
that results in this heterogeneity So it’s a very exciting time and I feel
like we’re at the tip of the iceberg in terms of our knowledge, burgeoning and
hopefully in a few years, with more scientists focusing on complex questions
and asking questions that they in their labs aren’t able to ask in isolation but
really combining forces, that will have much more information. I’d like to end by acknowledging people that have influenced my work and certainly my
cousin Mindy has been an inspiration before I even really started on this
journey. But colleagues that I’ve worked with over the years funding Institutes, graduate students, many of my colleagues who were here tonight, but my family and also
the families that have worked with over the years, hundreds and hundreds of
families in my career, and everyone has to be inspired, I think find their own
inspiration, and my inspiration really comes from my family and I’m lucky
enough to have my own crew of superheroes at home. Everybody’s got to have a Batman in their life, everyone’s got to have a Captain America, and
everybody’s gotta have a pirate, so I really like to acknowledge my crew of
superheroes. Number one superheroes in the front row here and my kids are a constant inspiration. Thank you for being here tonight. Thank you, Laura Lee. We’re going to have
a chance to have a little discussion to follow up on some of these themes that
Laura Lee just started off, but we’re gonna set the stage here to, to do
that, and so just to remind you if you have questions, we’re a very modern
organization here and so please feel free to send me a text if
you, if you want to join in on the discussion and I’ll try not to be too
millennial sort of like checking other parts of my phone. [LLM] I need some eye contact, I lack that in my world.
[PP] That’s right, that’s good. [PP] So let me just kick off this discussion by asking you I think a question that’s that’s really in the news all the time and that is, you know, is the prevalence of autism really rising the way that people seem to be
thinking or is it just our diagnosis is getting better? Is this really an
epidemic that we’re facing? [LLM] I think that’s a great question. So yes, and
yes, and maybe. That’s my short answer so we certainly are identifying more and
more people with autism. The diagnostic criteria have changed over the years We now consider autism to be more than just a narrowly defined autistic disorder
which was oftentimes associated with intellectual disability and very
narrowly defined and our diagnostic taxonomy’s have changed, our diagnostic
manuals have changed to broaden the scope of the definition. Now if definition changes were all that we’re changing I think that that’s going to
account for some of the increase in prevalence but probably not all of it. We know that genes are implicated in the disorder and we have some clues as to
potential risk factors, so a number of studies have come out in the recent last
couple 2, 3, 4, 5 years suggesting that paternal age
advanced paternal age is a risk factor. Potentially due to genetic mutations
associated with de novo mutations, so new mutations that are expressed in male
sperm and so certainly many people are waiting to have babies until they’re a
bit older and so we see advanced age potentially accounting for some of that
increased prevalence. We want to be careful to sort of differentiate between
risk and advanced parental or paternal or maternal age being a risk factor, but not
necessarily being a cause. There may be other risk factors, so there may be sort
of gene-by-environment interactions and without knowing sort of this specific
genetic mechanisms at play we can’t fully understand the gene-by-environment
interactions but certainly our environment is different. We know that
our environment is different now than our environment was 50 years ago and 100
years ago so there’s a lot of moving parts and I think that’s a really
complicated a really important question a really complicated question. So we are
seeing more cases being identified, our diagnostic sort of ability to detect
developmental differences early, autism is becoming more of a household name. You know you can’t say the word autism and sort of be faced with a blank looking
face. Most people have some, you know, sort of pop psychology culture, understanding
of what autism is. And so I think because it’s receiving more recognition, more press, our training for professionals who engage in these sort of developmental
screening diagnostic assessments has become better, our tools are becoming
sharper for identifying differentially differential diagnosis, all of those
things help us identify more children but I don’t think it explains everything. [PP] So a follow on that topic from the audience is, is there evidence that the
autism rates are a lot higher in the United States and if they are, why might that be and is that actually occlude as some of
the things you were just discussing. [LLM] Well, I think that’s a, that’s a great
question. We don’t have a lot of international
epidemiological studies conducted so there’s a couple of studies, one in Japan,
one in Europe, the Netherlands, but we don’t have sort of, we don’t have the
Centers for Disease Control and Prevention for example in every country
so we have better epidemiological studies and ongoing kind of repeated
studies, developmental surveillance studies set up through the CDC, and so I
think we have more information about the United States information that’s not
available in other countries, so really my answer is, I’m not sure, I’m not an
epidemiologist and actually if Eric Fombonne was here he’d probably give you
some wonderful answer with a French accent and I’m, um, but I think we just we
don’t have the sophisticated studies that would allow us to answer those
questions with the type of certainty that I would feel comfortable saying on stage and on video. [PP] That’s good, yes this is being recorded for everyone else to
enjoy in the future as well, and I think another question from the audience that I think
is probably right at the at the top of everyone’s list is, you know, what are the
most promising treatments right now for autism, especially non-pharmaceutical
ones if people are interested in that you talked a lot about these
interventions and so how is that? [LLM] Yeah, so I think the nature of our interventions
thus far is that we’re treating the symptoms we’re not treating the core
deficits, so we can ameliorate or reduce some of the symptoms of behavioral
symptoms, we can improve social and communication skills, but we’re not
treating the core. We the, the sort of the elusive core deficits are are very
difficult to, to treat, but I would say our most promising interventions are
those developmental and behavioral approaches that rely
on presenting information to learners in a very clear and salient way, providing
immediate feedback over a series of repetitions, embedding learning
throughout environments at home, in school, identifying sort of targets in a
in a very comprehensive way, interventions that focus on adaptive
behavior and improving social and communication, so these would be
interventions potentially delivered by speech and language pathologists, special
educators. There’s no silver bullet at this point. We know that earlier
intervention, particularly as the brain is developing, we really capitalize on
that neural plasticity, is important. We have lots of evidence to suggest that
our behaviorally based interventions, particularly if they’re delivered in a
developmentally appropriate way, are meaningful to children and can improve
functioning. We are developing our evidence to suggest certain predictors, or I would even say sort of moderators of interventions. So for example we know
that the intervention outcomes are better for children who have language
prior to the age of five. We know that children who engage in some of these
interventions who have, perhaps, intact cognitive abilities tend to do better in
some of our social skills and social communication interventions. So these are
factors that need to be considered but essentially our tried-and-true kind of
special education developmental and behavioral communication interventions
are the best we’ve got there are complementary and alternative treatments
out there that have not received the type of investigation that our
psychosocial and behavioral interventions have had, and I used to
practice in a developmental pediatrics office and getting our patients and the
the parents of our patients to sort of talk to us about the types of treatments
that they were considering, develop the relationship with the families such that
they can open up and say I’m sort of thinking about trying this
alternative treatment or that alternative treatment was really
important to us because if you think about it, we’re gonna throw everything at
the wall and hope something sticks And if you’re like me, you want to do
everything that you can for your son or daughter with a disability and so you’re
gonna try seven and hope that one works. The problem with that scientifically is
we don’t know which of those seven is actually working is it some combination,
is it the interaction among those seven, is it you know really interventions 1
through 5, and 6 and 7 are harmful. So from a kind of a family or a
parent perspective I really get this, that you want to try everything as
quickly as possible, but science and sort of the scientific investigation of these
interventions does take a little bit of time. Really, the evidence-based
interventions are developmental and behavioral and communication based at
this point. [PP] I would touch on just one thing that you very briefly mentioned, about, you know, there’s a wide variety of capacities of people with these
disorders so we have this concept of a savant that maybe there’s extraordinary
abilities and some subset of people – [LLM] You’re extraordinary Patrick.
[PP] Oh, thank you, that’s not,
[LLM] I that what you’re asking? [PP] No, that’s not what I”m asking, uh, but I’ll take it. But the, no I’m asking is this really an urban legend or are there some people
that whose brains work a little bit differently and really have abilities
that go beyond what we would call sort of average within the population? Absolutely, those individual differences. And we see some extreme patterns in strength areas or savant or splinter
skills and in some capacity, be it’s sort of visual, or memory, or attention to
detail, and, and huge gaps in other areas of functioning and so that, that is, that
is a thing it’s not an urban legend. It certainly doesn’t characterize the
lion’s share of people with autism spectrum disorder. Typically there are
peaks and valleys and strengths and weaknesses and individual skill sets with intact cognitive ability or advanced cognitive ability, sort of genius or savant-like abilities,you often see areas of relative weakness. And so it’s not sort of across-the-board strengths, it can be you know magnified in one particular area and relative weaknesses in
other areas. Again, the hallmarks of autism spectrum disorder are deficits
in social communication skills so it’s a brain disorder with social
communication deficits at its core and so you can see some strengths in other
areas, but certainly social communication would would be sort of a underlying core
symptom. [PP] I just wonder if that gives us some insights into parts of our brain or mental capacity that maybe could be developed or, uh, could lead to more extraordinary insights
in the future. So there is a scientist in the UK, Simon Baron-Cohen, who studies the male brain and he’s actually written, it sounds
funny, you know I’m probably 50% male in here and you’re probably thinking yeah,
pretty good, male brain, it’s awesome Well, the male brain,
[PP] The other 50% just said ‘Well.’ [LLM] It’s awesome, the other 50% is tuning me out right now. There, there are some clues. It doesn’t necessarily speak to themechanisms behind it, but there are some clues in sort of some patterns or sub,
some subgroup of kind of relative strengths and weaknesses. So sort of
visual rational thinking very concrete and if you think about social
communication and some of the nuances, and empathy, and social skills, and
communication sort of the antithesis to sort of rational and you know lots of
right angles, and I hope there’s no engineers in the room that I’m offending,
but, but there are some, some skills or some strength areas that are very
developed in the so-called male brain. And I’m not endorsing this model, but it is
something that is under investigation [PP] So I want to just start wrapping up and
focus on two things that a number of people have contacted us about. One, I
want to talk about the Spark just for a second, uh, because I think many people in
the audience are here because they have loved ones that are involved and so I
think many people are motivated to sort of get involved in research projects and
Spark is one that sounds very exciting both with that and other things that are
going on in your world and broadly how do people get involved in these kinds of
projects is there a way in? Yes, so Spark is in social media. There’s a Facebook
page I should have brought flyers I don’t have a spark tattoo yet but I’m
planning on getting one so I’ll have the contact information available at all
times but, but in all honesty you can google or you can go on Facebook and you
can look at Spark OHSU. This is a statewide collaboration so I’m not
switching teams at this point or anything. [PP] We’re all friends. We’re all together.
[LLM] We’re all together and the Knight Campus is bringing us even closer together. [LLM] So there are, there’s a very easy sign up online and actually to sign up it’s very easy and I should have should have had a slide with that
information and I can get that and we can potentially post it on the
[PP] Sure you know we can have a follow up on that. [LLM] Knight Campus, yeah, but it’s a very easy online
signup process and actually to get sort of your foot in the door in, consent, it’s
easy. The protocol does involve some online surveys, it does not require any
office visits or any campus visits, it’s online and there are collecting DNA so
they actually send you a kit in the mail where they’ll collect saliva samples and
ya ship it back and it’s a fairly straightforward process. In Oregon we’ve
recruited close to 3,000 participants and we have complete data on about
500. And you know, complete data means trios, it means DNA, I mean some of the
clinical indicators and all of the survey data. It’s very important but, but
arduous work and it’s difficult to recruit however we’re hoping as a
community of scholars in a community of sort of committed and interested folks
in our autism com- community that we’ll be able to reach our target goal.
I don’t know if we’ll reach our national target goal which is 50,000, but no
matter what, it will be the largest study of autism spectrum disorder to date and
so it will provide a lot of rich data for additional scientists to data
mine and and pave the way for additional studies. [PP] I suspect in five years we’ll
have you back and and this will revolutionize the way that we think
about these problems although if it’s true of everything else that we’re doing
in genetics and genomics it’ll just continue being very complex and lots to do. The final thing that I want to follow up
on is that you talked about interventions. We have both families, we
have professionals that maybe would like to know, does the University of Oregon
have courses or anything like that? What are the resources in our community,
or more broadly to sort of help you know implement these, these research
evidence-based approaches and how do we get that out into the world? [LLM] Are you helping me with my, you know, recruitment enrollment of graduate students at our
College of Education? [PP] Any of those things is good but uh. [LLM] I’ll just, I mean honestly I
had no idea what Patrick was going to ask me so this sounds sort of really, um,
the College of Education are [PP] Actually that’s from the audience not from me. [LLM] Okay, but so our
Department of Special Education is really nationally known in this area and
we’re ranked number 3 in the country. We’re very proud of our of our standing
and our offerings in this area. We have a number of faculty, not just me, who focus
on issues of autism and developmental disabilities. We have a master’s program that prepares
teachers, practitioners, and early intervention, and K-12. We focus on early
intervention all the way through post-secondary transition. I think this
is important because oftentimes a lot of the research does come out of the early
intervention, the young children, but these kids grow up, they’re in our schools,
they graduate, so we offer masters and doctoral programs. We have an
undergraduate minor in special education. We’ve got wonderful clinical
opportunities in our HEDCO Clinic and our new autism clinic, the HEDCO
autism research and training clinic, and I think what’s exciting for people in
the community who are thinking about perhaps going back to school or pursuing
some professional accreditation, or professional credentials, is that the
University of Oregon we’re not just training practitioners, we’re really
training practitioners who have a deep appreciation for the evidence base that
informs our practice. And, I mean, it’s why I moved to Oregon, I’ve been here for
9 years and it’s the College of Education and the multidisciplinary
nature of our work and certainly with the exciting advances in Applied
Sciences, I mean it’s what’s keeping me here. It’s it’s pretty exciting so if
anyone wants to dive, I don’t know if our dean, Randy Kamphaus, in the
audience, but no we’d be delighted to, to talk to folks about opportunities for
their own training and professional development. [PP] Great. Well, with that I’d
like us all to thank Laura Lee one more time. And again, thank you for coming out
tonight, we’ll wish you adieu, but Laura Lee, oh, wow this like real performance, awesome. [LLM] Best Batman, by the way. [PP] I don’t want to point out I didn’t get one of those after my talk. But, I just want to thank you again and just let you know that Laura Lee and I will be out, available in front for, you know, another ten minutes or so if
you have some questions that we didn’t get to. And I didn’t get to all of them
but I really appreciate the feedback that you provided during this
conversation. So goodnight everyone.

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