Babies and Autism: Advances in Research and Clinical Care

Transcript

• 00:00Well, why don't we go ahead
• 00:03and let's say get started?
• 00:06On so I'm really glad to see see all of you
• 00:10here and thanks so much for joining us.
• 00:13We're trying these.
• 00:14We actually have a mixed metaphor here.
• 00:16We're trying these fireside chats.
• 00:19And a series of these just to give a chance
• 00:23to have more smaller group discussions
• 00:25and meeting with members of our faculty.
• 00:28And we've got several of them planned,
• 00:30but the mixed metaphor is that we
• 00:32think of these as salon type events,
• 00:34so they're fireside jets salon type
• 00:37events that bring members of the faculty
• 00:40together who are working at intersections
• 00:42of science and care and and you'll really,
• 00:45I hope we also really would
• 00:47value your input for this.
• 00:49So as we're sitting
• 00:51around this virtual table,
• 00:52there's three members of our faculty.
• 00:54I think you know who work with babies
• 00:57and toddlers with autism and and develop
• 01:00known disabilities and doctor Kashiwabara.
• 01:03Cotrip and wife who is the beauty
• 01:05professor of Charles Skytree and
• 01:08directs the social and Affective
• 01:10Neuroscience Autism program and
• 01:13director of the Yale Toddler Disability
• 01:16Developmental Disabilities Clinic.
• 01:17Then we have Suzanne Mccardie.
• 01:19Suzanne can you wife?
• 01:22Research scientist and Co.
• 01:23Director of the Yale Social and
• 01:25Affective Neuroscience of Autism
• 01:27program and then Kelly Kelly.
• 01:29Doctor Kelly Powell,
• 01:30who is an assistant professor and Co.
• 01:33Director of the the Toddler
• 01:36Developmental Disabilities Clinic.
• 01:38So this group,
• 01:38they're going to talk about
• 01:40some innovations in the lab,
• 01:41especially around emotional development
• 01:43and how they partner with families.
• 01:45And it's just,
• 01:46I know I have heard things that
• 01:47they're going to talk about,
• 01:49and it's really very exciting
• 01:50and I'm glad we can do this.
• 01:52Salon Slash Fireside Chat
• 01:54because we're a small group,
• 01:57we're going to really actually
• 01:59encourage comments and questions
• 02:00during the presentation.
• 02:02I'll monitor the chat and I'll also
• 02:05monitor the raising your virtual hand.
• 02:07And then at the end we'll just tap.
• 02:09We'll have also time for
• 02:10additional questions,
• 02:11but if you want to just put
• 02:13something in the chat or raise
• 02:14your hand while we're talking,
• 02:15that'd be great.
• 02:17So Kasha can I turn to you.
• 02:20OK, well welcome and thank you
• 02:23very much for joining us today
• 02:26and thank you Linda and Susanna
• 02:29for organizing this gathering.
• 02:32Let me let me just.
• 02:35Share my screen so we can move
• 02:39towards. The actual presentation.
• 02:46I'm sorry, I'm just going to.
• 02:48Unshared injured when we're
• 02:49doing because there's one step.
• 02:51No, it's going good.
• 02:55We all have learned that there are multiple
• 02:58steps that we now need to take all right.
• 03:00So now by now you should be
• 03:02seeing my screen and the title.
• 03:04Is that looks great.
• 03:06Kasha everybody's there.
• 03:08OK perfect so so again thank you.
• 03:12Thank you for being here today
• 03:15and I'm done here with Susan
• 03:17Susan McCartney and Kelly Powell.
• 03:19And I will tell you a little bit about.
• 03:22Most recent developments in our
• 03:25research and clinical program.
• 03:28We're going to.
• 03:29I'll start as well by talking about
• 03:32very recent sort of innovations
• 03:35involving both the questions we
• 03:37are asking and also the methods
• 03:40we're using to study them.
• 03:42Susan will talk a little bit about emotional
• 03:45development in children with autism,
• 03:47focusing particularly on joy,
• 03:49and Karen Kelly will talk about sort of
• 03:53a long term partnerships that we have
• 03:56established many years ago with parents.
• 03:58And and now we want to take take
• 04:00it to the next level.
• 04:04So some of our most exciting research
• 04:08work has been focused lately on
• 04:13identifying perinatal markers of autism.
• 04:17And this work is based on on a basic
• 04:21premise or or hypothesis that autism is
• 04:24caused by alterations in genetic makeup.
• 04:28And then these genes begin to
• 04:32impact how neurons develop,
• 04:35communicate for networks very early
• 04:39during during first weeks of gestation.
• 04:43So by the time babies are born,
• 04:45it is quite possible.
• 04:47That their brains are tuned up
• 04:50somewhat differently than in those
• 04:53who do not eventually develop autism,
• 04:55and this differential tune up is
• 04:58going to affect how the children are
• 05:01going to develop social relationships.
• 05:05Now, in order to to study this,
• 05:09we are currently recruiting
• 05:10a sample of children who,
• 05:13due to genetic factors,
• 05:14are at risk for developing autism and
• 05:17we are studying their brain connectivity
• 05:19very shortly after birth and then we.
• 05:24Try to link it up with later outcomes
• 05:26to see if indeed there are any
• 05:29differences in how the brains are tuned
• 05:32at birth and what kind of effects
• 05:35they may have on later development.
• 05:38This kind of work would not be possible
• 05:42without coming together with a very
• 05:44large with a very strong group of experts.
• 05:47We've partner in these studies with
• 05:50foremost experts in imaging taught
• 05:53Constable desk in China House with
• 05:56our colleague and friend Laura Ment,
• 05:59who's a pediatric neurologist and also
• 06:02with our colleague and determine of
• 06:05the statistics department Joe Chang,
• 06:07who is a.
• 06:08World expert in data science and
• 06:10you know the the work we are doing
• 06:13here in terms of studying, mapping,
• 06:16functional connectivity from fetal to
• 06:19neonatal period in high risk babies
• 06:23would not be really possible without
• 06:26this group of experts coming together.
• 06:29And and that Yale is one of the
• 06:31few places when it's possible.
• 06:34And and you know the testament to
• 06:37that is that they're probably less
• 06:39than a handful of groups around the
• 06:42world that are studying autism during
• 06:45such early developmental periods.
• 06:50So how do we? How do we study
• 06:54brain development in young AIDS
• 06:56or brain connectivity in neonates?
• 06:58We are studying it using approach called
• 07:02resting state functional neuroimaging,
• 07:05which allows us to study
• 07:07intrinsic brain connectivity
• 07:09patterns while babies are asleep.
• 07:11It's a very safe and noninvasive approach,
• 07:15and the way we do it is we bring babies
• 07:18to our imaging center and we feed them.
• 07:21We burp them, we wrap them,
• 07:23make sure they are comfortable,
• 07:25and then we wait for them to fall asleep.
• 07:28When they do,
• 07:29we very gently slide them into the scanner,
• 07:32and while they are taking a nap,
• 07:34we're taking measurements of their
• 07:37brain structure and and measure
• 07:39how there is brain structure
• 07:41collective with one another.
• 07:43And after half an hour we are done.
• 07:45Babies are waking up and they go home.
• 07:49This kind of research provides us with
• 07:52incredible amount of information about.
• 07:55Functional into infrastructure of the
• 07:57brain that supports the functions
• 08:00that are very important for autism,
• 08:02and these include salience detection,
• 08:04emotion processing, allostatic regulation,
• 08:07language and and social attention.
• 08:12So in the study that we're just
• 08:15about to submit for publication,
• 08:16probably this afternoon.
• 08:20We examine a brain connectivity
• 08:22in in in in this group of neonates
• 08:25with and without autism.
• 08:27But the first question was, you know,
• 08:29brain is a very large and complex organ.
• 08:32So the question is which?
• 08:35Where do we start, where, where?
• 08:36Which brain areas are we are?
• 08:38Are we going to focus on and for
• 08:41this first study from for this first
• 08:45analysis from our prospective study,
• 08:48we selected.
• 08:49A specific brain area that's
• 08:51located on either side of the brain
• 08:54that's called anterior insula.
• 08:56You can see it here in blue.
• 09:01You can see it here in in blue.
• 09:04The reason why we focused on zero
• 09:07then on anterior insula is that.
• 09:09Unlike many other cortical structure,
• 09:13in solar matures extremely early,
• 09:15it's structurally ready to go already
• 09:17in the second trimester of pregnancy
• 09:20and shows very advanced functional
• 09:23maturity even before babies are born.
• 09:26Which suggests that this particular brain
• 09:28area is very important for survival.
• 09:33What's also important that insula is
• 09:35also heavily connected with other
• 09:38cortical and subcortical structures,
• 09:40which means that it facilitates
• 09:44communication between the structure and
• 09:47internal integration of information
• 09:49across the variety of structures.
• 09:53Functionally,
• 09:54it's involved heavily in emotion processing,
• 09:57facilitate salience detection,
• 10:00integration of sensory information,
• 10:03and preparation from action.
• 10:05So, in a way, insula is like a very
• 10:09important communicative habits you can.
• 10:11You can compare it to an airport in
• 10:13Atlanta if everything goes well in Atlanta,
• 10:16everything goes well with the
• 10:17rest of the country,
• 10:18but if something is off in Atlanta,
• 10:20we feel it at other.
• 10:22There was as well,
• 10:23and for that reason it is very
• 10:25important to understand whether
• 10:27insulin functions tunes sort of in
• 10:30a typical way shortly after birth.
• 10:34In kids who have genetic
• 10:36risk for developing autism.
• 10:38More recently,
• 10:39people suggested that insula also
• 10:41plays a critical role in development
• 10:44of social bonding and motivation,
• 10:46which is very important for our
• 10:50question relating to autism.
• 10:52Now, there have been a number of
• 10:54studies in older kids with autism,
• 10:56school age kids,
• 10:58adolescents that involve.
• 11:01Examining connectivity of of this
• 11:03brain regions with other regions,
• 11:05and there's a consensus that in
• 11:08older kids with autism insula
• 11:10is under connected does not
• 11:12communicate as much as this.
• 11:14This should be with other brain areas,
• 11:18but of course because these studies
• 11:19have been done on all the kids,
• 11:21we don't really know whether these
• 11:24kind of differences are primary
• 11:26in autism or whether they emerge
• 11:28secondary is an effect of having it.
• 11:31Social disability.
• 11:34So in order to sort it out,
• 11:36we enrolled a group of kids.
• 11:40Babies, neonates, newborns who do
• 11:43not have any family members with what
• 11:47autism we call them low risk sample,
• 11:49and we recruited a group of babies who
• 11:52have an older sibling with autism.
• 11:55So which means that they have elevated risk
• 11:59for developing autism if in low risk sample.
• 12:03We expect about 1% of kids to develop autism.
• 12:07In high risk. Example, we expect.
• 12:09About 20 or so percent of kids to
• 12:13develop about this and what we did.
• 12:16We examined using seed based
• 12:18functional connectivity approach.
• 12:20We examine brain activation
• 12:23or coactivation patterns.
• 12:25In both sample and,
• 12:27what we found was what we expected
• 12:30that in silicon EXPAREL strongly
• 12:32with other areas of the brain,
• 12:34including anterior cingulate cortex,
• 12:36which in which it forms the salience network
• 12:40as well as amygdala and and hippocampus,
• 12:44which are very important
• 12:46structure from motion processing,
• 12:47learning, and memory.
• 12:50What we did next.
• 12:52We compared the strength of the
• 12:53activation in these two groups to see
• 12:56if there are any differences amongst
• 12:58those who do or don't have risk for
• 13:00autism and what we found was that
• 13:03babies who are carrying genetic risk
• 13:07for autism show hyperactivation.
• 13:10Of the connectivity between anterior
• 13:13insula and amygdala and amygdala is
• 13:16another structure that tremendously
• 13:18important for emotion processing,
• 13:20learning, and memory.
• 13:21It's also heavily connected with
• 13:24other brain structures,
• 13:25so if insula is like Atlanta.
• 13:29Magalys like Chicago.
• 13:31So imagine that something wrong goes
• 13:34wrong with both of these airports.
• 13:36Communication across the entire
• 13:39country or entire brain.
• 13:41In this case,
• 13:42that might be quite disrupted in
• 13:45ways that are difficult to predict.
• 13:49So.
• 13:51But we also did we follow these
• 13:53babies we we scanned them at
• 13:55birth and we follow them again.
• 13:58When they were about 18 months old.
• 14:00And at that point we evaluated.
• 14:03What is the severity?
• 14:05Of behaviors we typically
• 14:08associate with autism.
• 14:10And then we correlated the strength
• 14:12of the connectivity between ends,
• 14:14insula, and amygdala.
• 14:15With that measure of of social
• 14:19vulnerabilities in our sound when all
• 14:21we saw was something very interesting
• 14:24and and encouraging in some ways.
• 14:27Is that there was a very strong
• 14:30association between lower
• 14:31connectivity at birth and higher
• 14:34autism symptoms at 18 months.
• 14:38So this was a striking and and novel
• 14:42presentation novel novel discovery of
• 14:45weakening of the very important circuitry
• 14:49that supports emotion processing,
• 14:51stealing detection and learning in autism.
• 14:54What we also demonstrate for the first
• 14:57time that some of the hyper activations
• 15:00that we see in older kids with autism
• 15:03may in fact be present already at
• 15:06birth when babies are just entering.
• 15:09The game of figuring out what their
• 15:12social and non social environment is.
• 15:15So we are very, very excited about now.
• 15:18This study we are working on,
• 15:21continuing it, accruing the samples.
• 15:24But as always,
• 15:25we are also thinking about the future.
• 15:27What is the what are the next step?
• 15:29How how do we want to capitalize or
• 15:32leverage this finding for future discovery?
• 15:36And and one of the lines of
• 15:38research they would like to pursue
• 15:41is to actually evaluate empirical.
• 15:43What is the specific impairment?
• 15:46How is the specific impairment at
• 15:49birth affect development of social
• 15:51motivation and social bonding?
• 15:53Because there's a hypothesis that there
• 15:55are some links between monsula and those two,
• 15:58but but we would like to be able to
• 16:01show it and paper in our samples.
• 16:05The second thing that we would like
• 16:07to do is to expand our investigation,
• 16:10broaden our investigation so so
• 16:12when we scan babies,
• 16:13we collect information from the entire brain.
• 16:17There's tons of information and and
• 16:18and we know that kids without this and
• 16:21not only have social difficulties,
• 16:23but actually they have.
• 16:25A lot of concurring conditions that have
• 16:28to do with with regulation of attention,
• 16:31regulation of emotions,
• 16:33language development, cognitive processing.
• 16:36And each of them contributes independently
• 16:40to long term outcomes in our kids.
• 16:44So what?
• 16:47Investigate if we can detect mechanisms or
• 16:50predictors of of these outcomes as well,
• 16:53but the idea of hopefully identifying
• 16:56better ways of intervening or understanding
• 16:59the underlying mechanisms. And finally.
• 17:04The the circuitry between amygdala
• 17:08and insula identify here is is very
• 17:12well conserved and and develops very,
• 17:16very early in during pregnancy,
• 17:18and so we would like to download extent.
• 17:21Our imaging findings in newborns to
• 17:24the last trimester of pregnancy,
• 17:27and to better understand the developmental
• 17:30dynamic of this of this circuitry.
• 17:33And also to see if there are
• 17:37potentially any alterations that
• 17:38that occur already before birth.
• 17:41And and I can talk a little bit more
• 17:43about it if you have questions further.
• 17:48So, so this is a tremendously
• 17:51exciting and and but part of part
• 17:55of the excitement of our work has
• 17:59to do with constant innovation.
• 18:01In terms of developing better methods of.
• 18:06Recording and quantifying.
• 18:10Characteristics that are related to
• 18:13neurodevelopmental office to the new
• 18:16developmental disorders including autism.
• 18:20And I would like to just tell you
• 18:22very briefly about two of these.
• 18:24These these new developments.
• 18:26So if you know past three years we've
• 18:29spent under pandemic conditions,
• 18:31we've been all affected by them in
• 18:35in so many different ways personally
• 18:38and and and professionally,
• 18:39and our research was affected to some extent,
• 18:43probably less than than in other groups,
• 18:45but we had to.
• 18:46We decided very early in the
• 18:49pandemic that we are going to.
• 18:51Spend this time innovating,
• 18:53developing new labs and and this work it was.
• 18:57It has been really led by Doctor Angelina
• 19:01Vernetti who is our former postdoc.
• 19:05She came here five years ago and now
• 19:07she's an associate research scientist,
• 19:09and so we validated 22 specific
• 19:12methods for studying outcomes in our
• 19:14our babies home with kind of art.
• 19:17One of them involves recording
• 19:20gaze behaviors or attention.
• 19:22During the life interaction
• 19:24face to face interaction,
• 19:26some of you might be familiar with
• 19:29the work we do in in our lab that
• 19:31involves studying attention by
• 19:33presenting children with with various
• 19:36images on the flat computer screen,
• 19:38presenting them with videos
• 19:41with speech stimuli.
• 19:43A variety of emotional stimuli and
• 19:45recording where they are looking and
• 19:47then based on the patterns of looking,
• 19:49inferring what's happening in their brain.
• 19:53We've been very successful with this work.
• 19:57To a number of discoveries,
• 19:59but it always sort of.
• 20:01There was an always a question in sort of
• 20:03in the back of our mind is what happens if.
• 20:07How can we better evaluate the trials
• 20:11attentional choices when they are actually
• 20:14interacting with someone face to face?
• 20:16And this technology has become available
• 20:19in the past couple of years and we were
• 20:22able to purchase it and establish the
• 20:25entire lab and the way it looks that
• 20:27the kiddo is sitting either in a hard cut,
• 20:30high high chair or parents lab
• 20:33across the table from an examiner,
• 20:36with or without toys.
• 20:37And there's a low.
• 20:39Low eye tracking setup that's
• 20:41designed to to capture the child's
• 20:44attention as they look at the
• 20:46person who's interacting with them,
• 20:49and it may look like that this
• 20:51morning I had to wear my hat and
• 20:55my coat and my mittens and a scarf.
• 21:00I bet you are a cold this morning too.
• 21:03Every Dieter cooked OHA dinosaur coat.
• 21:07I have a blue coat.
• 21:08And I also heard that it might snow.
• 21:12I have my old friend.
• 21:14You have your own life hat.
• 21:16So as you can see,
• 21:18as the child is interacting with.
• 21:21With mom or in this case,
• 21:23Megan the examiner,
• 21:24we are able to track very precisely
• 21:28where the child is looking
• 21:30at all times and the
• 21:32significance of that is that when
• 21:34we then take the amount of time,
• 21:37the proportion of time the kids spent
• 21:39looking at the examiner's face and we
• 21:42correlated with severity of autism symptoms,
• 21:44we see that there's a very,
• 21:46very strong association.
• 21:48Between the two, let's looking at the face,
• 21:51higher severity of autism symptoms
• 21:53with the idea that so So what?
• 21:56What? It tells us.
• 21:57Basically, this task is a wonderful,
• 21:59wonderful proxy for assessing very
• 22:02quickly and in a very naturalistic way.
• 22:06Severity of social difficulties the
• 22:09children experience and and we are
• 22:12very excited to take this this this
• 22:16this particular outcome measure.
• 22:17To the next level with our imaging studies,
• 22:21there's a second lab that we
• 22:23developed during the pandemic.
• 22:24This is in collaboration with our
• 22:26colleagues at the Haskins Labs,
• 22:27specifically Doctor Richard Aslin,
• 22:31who's foremost most most world renowned
• 22:36neurodevelopmental psychologist
• 22:39and we developed a way to actually
• 22:42not just study attention in their
• 22:45context of real-world face to face.
• 22:48Their action,
• 22:49but actually looking into the brain
• 22:51and seeing what is the what are the
• 22:54activation patterns in response to the
• 22:56child's interaction with the outside world.
• 22:59We use it using some we we do it using
• 23:02something that's called functional
• 23:04near infrared spectroscopy or years,
• 23:07which is a non invasive imaging technique
• 23:11that can be implemented anywhere and
• 23:15involves wearing this very handsome.
• 23:18That,
• 23:19and you might think it's hard to put on,
• 23:22and it might be,
• 23:24but we we have developed a lot
• 23:26of expertise in doing so.
• 23:27So hey,
• 23:30hey.
• 23:31Wow I
• 23:33love this hat Cecilia.
• 23:35I love this hat. Good job.
• 23:39And and then the child can watch something
• 23:42on the screen or interact with mom.
• 23:45And as they are doing it,
• 23:47we can record brain activity.
• 23:51The child's brain activity.
• 23:53And you know, in a way that's quite
• 23:56similar to what we would do in the magnet.
• 23:59It's very hard to keep a
• 24:01toddler and the magnet awake.
• 24:03So so we are tremendously excited
• 24:05with these two new developments.
• 24:08And we are already employing them.
• 24:10In our studies,
• 24:11and we actually last week submitted
• 24:13a grant application that will rely
• 24:16very heavily on both of these
• 24:18labs or all of these methods.
• 24:21And with hey,
• 24:24with that I would like to thank you very
• 24:27much for your attention and from all of us,
• 24:31including the babies who who who come
• 24:34to our studies or to our clinics.
• 24:36And I would also like to thank
• 24:39you for your support because your
• 24:42support allows us to allows us
• 24:45freedom to take risks and invest
• 24:48into the most cutting edge.
• 24:51And and.
• 24:53An exciting questions and
• 24:56methodologies so thank you so much.
• 25:01Kasha might I turn to Suzanne doctor Mccart.
• 25:08Unless they do, we have questions for Kasha
• 25:10right at this moment?
• 25:14I actually have a question.
• 25:15Can you hear me?
• 25:17It's Prescott, it's been a while.
• 25:20I was wondering, given that
• 25:21you were looking at the high risk
• 25:23sibs, were their older brother
• 25:27or sister? Do they all have
• 25:29the low connectivity and the in the. Anterior
• 25:36insula and given the heterogeneity
• 25:39of autism, how prevalent is that
• 25:41feature and does that correlate to
• 25:43a certain phenotype?
• 25:46So we know from studies of older kids that
• 25:50their reports of atypical connectivity
• 25:53between these two specific areas,
• 25:55so it has been it has been reported earlier.
• 26:00We don't know exactly whether the
• 26:02older sets of of of our kids had
• 26:05similar feature brain features.
• 26:07We were not able to.
• 26:08This is this is something that we
• 26:11discovered in the past two months so,
• 26:13but it would be very interesting
• 26:16to see and if in genetically
• 26:20similar family Members this
• 26:24particular feature carries through.
• 26:26I agree that.
• 26:37Any other questions?
• 26:41Doctor mccard
• 26:51and you can you see my screen
• 26:53look perfect OK? Great.
• 26:58It's a great pleasure to be
• 27:00here today to speak to you
• 27:02all about some of our work.
• 27:04I'll be talking today about
• 27:07emotional development,
• 27:08and in particular, joy.
• 27:10So emotions play a major role in
• 27:13how children experience the world,
• 27:15but the majority of behavioral
• 27:17research on autism has focused
• 27:20mainly on its core symptoms and
• 27:22very little attention has been paid
• 27:25to other aspects like children's
• 27:27emotional experiences or have
• 27:29children with autism learn.
• 27:31So today I'll tell you a little
• 27:33bit about our research program on
• 27:35emotions in young children with autism.
• 27:40So emotions influence a really broad
• 27:43range of cognitive processes as well
• 27:46as emotional and even physical health.
• 27:48Different types of early emotional
• 27:50reactivity are associated not only
• 27:52with later developmental skills,
• 27:54but also the likelihood of various
• 27:57emotional and behavioral problems.
• 28:03A common picture of the lives of
• 28:05children with autism is 1 where
• 28:08negative emotions dominate.
• 28:10For example, children with
• 28:11autism have a lot of tantrums.
• 28:13Children with autism are anxious,
• 28:15they're sad, and they generally have
• 28:18trouble regulating their emotions.
• 28:20This may all have some truth to it,
• 28:23but this is where the little
• 28:25research on emotion has focused
• 28:27on the negative emotions.
• 28:31But we really know close to nothing
• 28:33about how they experience the positive
• 28:35end of the emotional spectrum.
• 28:37And this is a huge gap in knowledge
• 28:39because positive emotions like
• 28:41joy are incredibly important.
• 28:43Positive emotion increases levels of the
• 28:45neurotransmitter dopamine in the brain,
• 28:48which is important to processes
• 28:50like motivation, reinforcement,
• 28:51learning and problem solving.
• 28:54Joy is also related to sociability
• 28:58and overall adjustment,
• 28:59at least in the general
• 29:01population of children.
• 29:02This is what we know.
• 29:07Because no one had investigated this,
• 29:09we designed a study to examine how
• 29:12Tyler's thought TISM experience
• 29:14emotion in everyday situations,
• 29:17and the results were very different,
• 29:19more complex than we expected.
• 29:23So first we were not too surprised to
• 29:26see that in the anchor condition that
• 29:30we created in the lab that there was
• 29:34more frustration for the kids with
• 29:36autism compared to their developmentally
• 29:38delayed and typically developing peers
• 29:40in situations like being in a car seat.
• 29:44But in situations where we presented
• 29:47them with unusual toys or novel objects,
• 29:49they were actually less fearful than others,
• 29:53and that was not an expectation we had,
• 29:56but very interesting were the results from
• 29:59the joy condition, and we know that it.
• 30:01Sometimes it can be difficult to get
• 30:03a smile out of some kids with autism,
• 30:06but when we presented them with things
• 30:08like a puppet show and bubbles,
• 30:10we observed just as much smiling
• 30:13and laughter.
• 30:14From them compared to their peers,
• 30:16so it looks like during situations
• 30:19that are typically fun for little
• 30:21children like a puppet show,
• 30:23there is a lot of positive affect.
• 30:27Now overall, if we take this all together,
• 30:29we see a more complex landscape.
• 30:33If you will,
• 30:34of emotional expression and very
• 30:36young children with autism now.
• 30:38Next we took a closer look at
• 30:41the Puppet Show task to see not
• 30:43only what children expressed,
• 30:45but also how they shared it.
• 30:49And there were more surprises here.
• 30:51So during this fun activity which
• 30:53didn't have a lot of social demands,
• 30:56they shared their enjoyment with their
• 30:59parent just as often as the kids who had,
• 31:02who were typically developing and now shared.
• 31:05Enjoyment is something that we generally
• 31:07see less of in children with autism,
• 31:10and it's something that we like
• 31:12to foster whenever possible.
• 31:14So this puppet activity kind of intrigued us.
• 31:17It seems to be a sort of normalizing
• 31:20context where children with autism
• 31:23experience positive emotions,
• 31:25and they shared them as much
• 31:27as other children.
• 31:28So why this response to puppets?
• 31:30Do we have any understanding of of
• 31:33puppets and and can we explain why they
• 31:36might elicit this kind of a response?
• 31:43So we had heard some anecdotal
• 31:45reports that children with autism
• 31:47can become very interested in
• 31:49puppets and public characters,
• 31:51and the study that I just described suggests
• 31:54that puppets are a source of pleasure.
• 31:57So to take just a little bit of
• 32:00a step back as you just heard.
• 32:02From Kasha and from knowing maybe a
• 32:05little bit more about our studies,
• 32:07one of our areas of expertise
• 32:10is social attention.
• 32:11We know from our many studies
• 32:13of infants and young children
• 32:15that social attention is greatly
• 32:17impacted and autism early on.
• 32:19So what do we know about
• 32:20attention to puppets?
• 32:26So in this very recent study we
• 32:29presented preschoolers with a brief
• 32:31video in which a person and a puppet
• 32:34engaged in a conversation when the
• 32:36person was speaking children with autism
• 32:40did not attend particularly well,
• 32:42but when the puppets spoke,
• 32:44there were high levels of
• 32:45attention to the puppets face,
• 32:46much like what we saw with the
• 32:50typically developing children.
• 32:51Also a very important finding in the
• 32:54study was that the preference for
• 32:56the puppet speaker was not associated
• 32:58with severity of autism symptoms,
• 33:00so children who were severely
• 33:02impacted by autism were just as
• 33:04likely to attend to puppets as those
• 33:07with less severe autism symptoms.
• 33:09So, given all of these results,
• 33:11it seems that puppets might be a
• 33:13very effective way to introduce
• 33:16social communication to kids
• 33:18in therapeutic contexts.
• 33:20In other words,
• 33:21interacting with puppets may help
• 33:23toddlers with autism develop better
• 33:25engagement skills with human social partners.
• 33:32We know that teaching kids with
• 33:34autism can be very challenging.
• 33:36Our work suggests that there are
• 33:38ways to normalize both attention and
• 33:40joy and young kids on the spectrum,
• 33:43with puppets being one Ave to reach children
• 33:45with significant learning difficulties,
• 33:48and there are sure to be others.
• 33:50Activities that elicit solid
• 33:53attention and inspire.
• 33:54Smiling and laughter are likely to
• 33:56facilitate cognitive processes involved
• 33:58in learning and problem solving as
• 34:00well as better social engagement.
• 34:06So in some future directions,
• 34:08we are really interested in
• 34:10how the experience of joy may
• 34:12enhance social engagement,
• 34:13learning and generalization
• 34:15for children with autism.
• 34:17Links have been documented in the
• 34:19general population and we think
• 34:21that these principles may also be
• 34:23operating in children with autism,
• 34:25but this is an area that we are
• 34:27very excited to investigate further.
• 34:34I would like to give special thanks to
• 34:37all the associates because it would
• 34:39not be possible to do some of this
• 34:43innovative work without you. Thank you.
• 34:47Thank you Susan. Ohh I love the images
• 34:51that you show. Any any questions?
• 34:58I would just make it a comment that.
• 35:01Can you show the Sesame Street characters?
• 35:05So I wonder whether there's
• 35:07any difference between
• 35:10the recognition the the joy,
• 35:13the the, the, the feeling.
• 35:16If it's a puppet
• 35:17that they may have seen
• 35:19before, there is a familiar
• 35:21puppet as opposed
• 35:22to some other kind of puppet.
• 35:26You probably look at that.
• 35:28That's a great question. It is.
• 35:31I'll just note that the in this
• 35:33in the study where I showed the
• 35:35the image of the conversation
• 35:36between the puppet and the person.
• 35:38This was actually a novel puppet
• 35:40that is not one of the standard.
• 35:43You know, characters that that are
• 35:44that are shown on TV or in on the
• 35:47Internet or anything like that.
• 35:48So in this case it was actually
• 35:51a novel puppet.
• 35:51Certainly it has some of the
• 35:54some similar features to some
• 35:57Sesame Street characters.
• 35:58You know, maybe there are some.
• 36:01There are probably similarities,
• 36:02but that's that's a great question.
• 36:05Actually, the the puppets were sort
• 36:08of custom design for our study.
• 36:10And we we had Cheryl Hanson and some of
• 36:15the puppeteers from her group to come to
• 36:19Yale with with bags full of materials,
• 36:22and they assemble the puppets
• 36:25here on the on the spot,
• 36:27and we recorded the videos.
• 36:29We are now using in in number of studies,
• 36:32not just the study that Suzanne mentioned.
• 36:34That which is published.
• 36:36But a number of studies and these are
• 36:40the most beautiful and amazing stimuli
• 36:43you can ever wish for in a study.
• 36:46To the extent that actually you know the
• 36:49the kids are absolutely mesmerized by them,
• 36:51the puppets always wins over a person.
• 36:56Even even informal babies,
• 36:58does that continue because
• 37:00I've had the experience granted
• 37:02just with my daughter where she's focused,
• 37:05focused, focused for one day,
• 37:06and the next day she wants to
• 37:08have nothing to do with it.
• 37:10So I'm curious as to whether you've seen that
• 37:12pattern. Was it just her?
• 37:15Well it it. It depends what we
• 37:17do with the puppets, right?
• 37:19So so one of the hypothesis that we
• 37:23have is that it's it's possible that
• 37:26puppets have for whatever reasons
• 37:28they have a capacity to make kids
• 37:31with autism excited and joyful,
• 37:34which raises their arousal level,
• 37:36raises their neurotransmitter levels,
• 37:38and makes them probably more receptive
• 37:42to engage, sustain attention and
• 37:44learn and return what they learn.
• 37:46This is a hypothesis we have
• 37:48not been able to test it.
• 37:50But we we are hoping to do it
• 37:53at some point in the future,
• 37:55because if so,
• 37:57that would be a such a natural way.
• 38:00Of imbuing therapeutic interaction
• 38:03with something that's I mean who
• 38:06doesn't like puppets right with
• 38:08something that's inexpensive,
• 38:09easy to operate.
• 38:11It's highly interactive, right?
• 38:13It can be.
• 38:14It can change the script on the
• 38:17fly depending on the child's level
• 38:19of interest or motivation or.
• 38:22Can mirror the mood.
• 38:23It can counter the mood.
• 38:25It can introduce new topics,
• 38:27distractions in a way that's
• 38:29not related to the person.
• 38:31So so in in that respect.
• 38:34It would be really,
• 38:36really cool and exciting if if
• 38:38that was a medium that we could
• 38:41introduce into brother practice.
• 38:43In fact,
• 38:45tomorrow we are meeting with the
• 38:46heads of the birth to three system.
• 38:50The new there's a new new team and they're
• 38:53tremendously excited about our work.
• 38:55We are going to talk about it.
• 38:57And see if they would be interested
• 39:00in adopting some of these strategies
• 39:01in a sort of more intuitive way
• 39:03in their intervention programs.
• 39:09The puppets talk, yes. They have a voice.
• 39:13They have a voice,
• 39:15how similar to a human voice.
• 39:18This is me. It was a female.
• 39:20Was it high? Is it low?
• 39:21I mean do these things have any effect?
• 39:25To mend this. Tremendous and that's
• 39:28why they can be individualized to
• 39:31the child's preferences and likes.
• 39:34So some might prefer you
• 39:36know very high pitched voice.
• 39:38I I don't want to do the
• 39:40packets here that we have a.
• 39:41We have a collection of
• 39:43pockets here actually,
• 39:44but you don't want me to be a puppet.
• 39:46You don't want to see me being a puppeteer,
• 39:49but but you can adjust the voice
• 39:51depending on the child's preference.
• 39:53It can be low.
• 39:53It can be high, it can be quiet,
• 39:56compassionate.
• 39:56It could be very excited
• 39:58and and and and high.
• 40:01And and you can adjust the depending
• 40:03you know if you start losing the
• 40:05child's attention you can switch.
• 40:07Right, you can switch characters.
• 40:08You can switch voices,
• 40:10you can switch motions,
• 40:12and that's the incredible versatility
• 40:16of of the of that meeting.
• 40:22I think Suzanne's got a fun project.
• 40:27I agree.
• 40:29I would say there's several of us
• 40:31when there was their opportunity.
• 40:32We love to just go watch the puppets.
• 40:36Kelly, would you like
• 40:37to? Take us forward.
• 40:40Definitely.
• 40:42All right, you can see my screen
• 40:45and hear me as everyone said,
• 40:47it's just a real pleasure to be here today.
• 40:49Speaking with all of you,
• 40:51and I'll talk specifically about our
• 40:54approach in the lab to partnering
• 40:56with and also supporting our parents.
• 40:59As mentioned at the center of our research,
• 41:02aims are really the children families
• 41:03that we serve and we keep families
• 41:06in mind as we are planning our
• 41:08research questions and writing our
• 41:10grants to the strategies we end up
• 41:12using for recruitment and enrollment.
• 41:14And of course the care we provide when
• 41:17the families come to our lab for their
• 41:19visits and then we carry that feeling
• 41:21and that thought of the families all
• 41:23the way through the dissemination of
• 41:25our research findings and making sure
• 41:27that families can understand the science.
• 41:29They were doing.
• 41:31And we also understand the role we play
• 41:33as researchers and clinicians as families
• 41:35really do and trust us with their children,
• 41:39often their infants,
• 41:40and they end up allowing us to
• 41:42be even a small part of their
• 41:45child's developmental journey,
• 41:46and our goal is to have families
• 41:48feel welcomed, feel accepted,
• 41:50feel valued,
• 41:51and definitely to feel supported.
• 41:54And we believe that developing this
• 41:57partnership with families is the core
• 41:59of understanding the development of ASD.
• 42:02This is a real bidirectional
• 42:04relationship we have with families
• 42:06such that we are always trying to
• 42:08listen and learn from their experience
• 42:10and hear about their needs and be
• 42:12as responsive as possible to this.
• 42:16So I wanted to mention a story that
• 42:18was released about six months ago by
• 42:20Yale Medicine about a young man named
• 42:23Danny who was actually first evaluated
• 42:25by Kasha and other similar group when
• 42:27he was 2 1/2 years old through one of
• 42:31our research studies and Danny is now 18.
• 42:33Danny has graduated from high
• 42:35school in Connecticut last year
• 42:37and is currently studying marine
• 42:39biology at Eckerd College in St.
• 42:41Petersburg,
• 42:41FL.
• 42:41And I encourage you to take a look
• 42:44at this article and I wanted to
• 42:47specifically highlight something,
• 42:48Danny's mother said.
• 42:49She said that the recommendations
• 42:51from the Yale Child Study Center
• 42:54paved the way for her son's success,
• 42:56in part by equipping her to be a
• 42:59strong advocate for his needs.
• 43:01And in this article,
• 43:03Danny's mother also thanked Kasha
• 43:05specifically for listening to the
• 43:07family's concerns and helping them
• 43:09to further understand Denny's needs.
• 43:11And overall,
• 43:12the sentiment is that early
• 43:14diagnosis and recommendations for
• 43:16interventions that were specifically
• 43:18tailored to Danny had been key to
• 43:21his success and also was helping
• 43:23his parents become advocates for him,
• 43:26and this story is powerful in many levels.
• 43:28As you can imagine, but for me and our team.
• 43:32The idea of empowering families and
• 43:34helping them to fully understand their
• 43:37child's often complex profile of
• 43:39strengths and areas of vulnerability,
• 43:41as well as helping them find their
• 43:44advocacy voice is so crucial and
• 43:46clearly has a long lasting impact on
• 43:49the child's development.
• 43:51So one way we have tried to support
• 43:53families is by offering a monthly parent
• 43:56support group that has historically
• 43:58been in person and turned virtual
• 44:00during the pandemic and what has
• 44:02been incredible about this group in
• 44:04particular is that originally began
• 44:06with four families who had children
• 44:09around the age of two years old who
• 44:11were just diagnosed with autism,
• 44:13and these children are now nine years old.
• 44:16And the group has grown tremendously
• 44:18from these four original families to
• 44:20now having well over 100 families
• 44:22on our listserv,
• 44:23and sometimes upwards of twenty
• 44:26families are joining anyone
• 44:28meeting and during these meetings,
• 44:30I was able to witness first hand the
• 44:33power of familial connection and
• 44:35sharing stories with other parents who
• 44:37understood the journey the families were on.
• 44:40I learned,
• 44:40and I continue to learn so much
• 44:42from these families about their
• 44:45experience receiving a diagnosis.
• 44:47The hurdles they face trying to
• 44:49get services started the question.
• 44:51They asked each other about how to
• 44:54navigate conversations with families and
• 44:56friends about their child's diagnosis.
• 44:582 questions that they asked me about
• 45:01how to manage a child's behavior or
• 45:03how to help their child communicate.
• 45:06And another fascinating aspect of this.
• 45:08Parents support Group that has
• 45:10been able to witness over the years
• 45:12are parents becoming advocates and
• 45:15that transition to becoming their
• 45:17child's best advocate.
• 45:19And one of the biggest hurdles we
• 45:21hear from families all the time is
• 45:24insurance not covering something like
• 45:26applied behavioral analysis through
• 45:28the evidence based intervention and
• 45:30one of our original families paved
• 45:32the way for Yale to change its policy
• 45:35about covering ABA services for those
• 45:37enrolled in the Yale Health Plan.
• 45:39And not only was this a huge impact
• 45:41on the community,
• 45:43but inspired another parent who
• 45:44heard this mom's journey and she
• 45:47was a teacher in New Haven,
• 45:48so she decided to.
• 45:50Advocate for her own child and to change the
• 45:53policy of not only the school she worked in,
• 45:55but ended up changing the policy
• 45:57for the whole city of New Haven.
• 45:59So she single handedly helped
• 46:01hundreds of families.
• 46:03So not just teachers,
• 46:04but parents who are employed as firefighters,
• 46:06police officers and other city
• 46:09employees who had children with autism
• 46:12who needed access to ABA services.
• 46:15But we feel like we could be doing more.
• 46:17We want to do more to help
• 46:19educate and empower families,
• 46:20and we want to expand this parent
• 46:23support group idea and the plan for
• 46:25this extension is really grounded
• 46:27in the years of work we have with
• 46:29families as well as our knowledge of
• 46:31various evidence based treatments and
• 46:33strategies that are currently available.
• 46:35So we plan to offer individual
• 46:37treatment to parents and really
• 46:39to cover kind of four main areas.
• 46:42So the first one is about providing
• 46:44a space for parents to process their
• 46:46own emotions following a diagnosis
• 46:48which we know can be highly varied
• 46:50and this can include reviewing
• 46:52various stress management and coping
• 46:55strategies to finding ways to talk to their
• 46:58family members and friends about autism
• 47:00or connecting them with other families.
• 47:03And the second theme is
• 47:05psychoeducation about autism.
• 47:06What it is, but also what it's not and
• 47:09about their own child's unique profile
• 47:12of strengths and areas of growth.
• 47:15And then the third is helping parents
• 47:17navigate the often complex systems
• 47:19involved in finding and then building
• 47:21their child's intervention team
• 47:23because it's usually more than just one
• 47:25clinician or one provider and helping
• 47:28parents decide who is the best team
• 47:30for their child can be incredibly.
• 47:32Critical in the child's development.
• 47:35And finally,
• 47:36we aim to teach parents various things
• 47:38that they can do during everyday
• 47:40routines and interactions with
• 47:42their child to help further promote
• 47:44communication and social development.
• 47:46So these can be strategies they can
• 47:49utilize during their daily kind of days.
• 47:51During meal time, diaper changes,
• 47:53bath time and so forth.
• 47:56And our intention in this type of
• 47:58treatment is to really bridge that gap
• 48:01between receiving a first time diagnosis
• 48:03and then the child actually beginning
• 48:05their early intervention program,
• 48:07which we know can take several months.
• 48:09So this treatment would be time limited.
• 48:12We suspect maybe three months in length.
• 48:15And again,
• 48:15the goal is to target this very,
• 48:17very transitional period for families.
• 48:20There's so much out there on the
• 48:22Internet and then the community and
• 48:24parents often don't know where to go
• 48:26or where to start on this journey.
• 48:28Therefore,
• 48:29we aim to really begin working with
• 48:31parents as soon as possible and the whole
• 48:34purpose of this type of intervention
• 48:36is once again empowering families to
• 48:39ensure families feel like they are
• 48:41getting the best head start that they
• 48:43can as they begin their journey of
• 48:45parenting a child with special needs,
• 48:48and we want them to feel knowledgeable,
• 48:50we want them to feel equipped to become
• 48:53their child's best advocate because we
• 48:55know that this is so incredibly important.
• 48:58So before I end,
• 48:59we also wanted to at least briefly
• 49:01mention that part of our labs mission
• 49:04is really to train that new generation
• 49:07of clinicians and researchers,
• 49:09and many from this group are from
• 49:10the past three to four years,
• 49:12others from a little while ago,
• 49:14but many of our trainees have gone
• 49:16on to study medicine, psychology,
• 49:18social work, public health,
• 49:20speech, language, pathology,
• 49:21epidemiology, and the list goes on.
• 49:24And as they transition into their
• 49:26chosen career path, we do provide.
• 49:29Ourselves in providing them with some
• 49:31foundational knowledge and experience
• 49:33regarding family centered clinical care,
• 49:36especially within a research program.
• 49:40And with that I want to thank you for
• 49:42your time and attention as well as your
• 49:44support of our work over the years.
• 49:45And my son Reed also says thank you.
• 49:51Thank you, Kelly.
• 49:53So questions or any discussion?
• 50:01Bravo. Thank you, janitor. I you know,
• 50:06as as a social worker by training,
• 50:09although I don't never put
• 50:11up my shingle, I think I'm
• 50:13a big, big big believer in support groups
• 50:16and family centered care and
• 50:19everything you just described.
• 50:20I think it's fabulous. Thank
• 50:23you, it really is at the
• 50:24heart of what we do. Yeah.
• 50:33Just looking to.
• 50:35See if any other.
• 50:37Questions in the chat or otherwise.
• 50:45If I if I just may add something
• 50:48to to the last slide that Kelly
• 50:50presented when she presented our
• 50:52investment into the future as I was
• 50:54as we were putting through the slide,
• 50:56I realized that both Suzanne and Kelly came
• 50:59to us as postdoctoral trainees, right?
• 51:04And and stay thankfully stayed
• 51:06with us and contributed their
• 51:08tremendous talent to this program.
• 51:12Good point.
• 51:17Well, we, we'd be very
• 51:19grateful for your feedback.
• 51:20Also, on this kind of fireside chat salon,
• 51:24just opportunity to get updates
• 51:26through zoom and using this format in
• 51:30any other topics you'd like to hear,
• 51:32or any questions that you might
• 51:34have after you get off from.
• 51:35I'm sure Costa and the team
• 51:37would be more than glad to.
• 51:39I have a discussion right kussion.
• 51:42Absolutely anytime.
• 51:47Contra, do you want to have the not last
• 51:49word but the transition word?
• 51:53Well, we truly appreciate
• 51:55your your your your.
• 51:57And coming here and helping us,
• 52:00you know, with some of us,
• 52:01we've had discussions in the past
• 52:03thinking about what is important.
• 52:05What are the priorities in the
• 52:07field and and your input is really
• 52:10tremendously important for us and
• 52:12and we are grateful and look
• 52:15forward to future discussions.