Babies and Autism: Advances in Research and Clinical CareMay 12, 2022
February 23, 2022
In the first of a new series of webinars for YCSC Associates, this virtual “fireside chat” included YCSC faculty members Kasia Chawarska, PhD; Suzanne Macari, PhD; and Kelly Powell, PhD. The session involved an overview of lab resources and pilot studies, fetal/neonatal imaging, supporting parents of newly diagnosed babies, diversity and inclusion initiatives, and more. For more information about this work, please visit the YCSC website at: https://medicine.yale.edu/lab/chawarska/.
To CiteDCA Citation Guide
- 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.
- 09:54it'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.
- 13:51But 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.
- 23:19and 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,
- 23:31Wow 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,
- 39:56It 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.
- 40:42All 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.
- 42:41And 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.
- 48:29we 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.