Growing a Pipeline to Improve the Lives of Children and Families Through Innovative Research, Service, and Training

Transcript

• 00:05And welcome everyone.
• 00:06Thanks so much for joining us.
• 00:08For those of you who are new to our
• 00:10annual Associates meeting, welcome.
• 00:12So glad you're here. I'm Linda Mays.
• 00:15I'm the Director of the Child
• 00:17Studies Center and just very grateful
• 00:19for you joining us via ZOOM.
• 00:22We look forward to when we will
• 00:24do this event again in person,
• 00:26hopefully next year.
• 00:28But again, we're just grateful
• 00:29for your taking the time.
• 00:31This has been a remarkable year
• 00:33for the Child Study Center with
• 00:35so much clinical activity.
• 00:37There's so many children in need,
• 00:38a remarkable year for our research,
• 00:41new grants, new discoveries.
• 00:43And we're always very enriched H July
• 00:47to have our new fellows come and
• 00:50join us for our educational mission.
• 00:53This year we're trying another format,
• 00:56format that we hope works well
• 00:59for you where you have a chance
• 01:01to introduce you to many members
• 01:04of our faculty and our fellows.
• 01:06We'd also encourage you and we'll give
• 01:08you links that we have a number of
• 01:10posters and talks that are online if
• 01:13you want to learn more about the center.
• 01:16But the format comes out of this out of
• 01:19a story and that is over the last few weeks,
• 01:23indeed even months.
• 01:26And the opportunity is,
• 01:28I've spoken with pediatricians and gone
• 01:31around to various meetings to meet with
• 01:34families and hear pediatricians and
• 01:37other other mental health folks talk
• 01:40about the impact that coming to the
• 01:43child Study Center has made on them,
• 01:46where they're coming for a research study,
• 01:50participating in research study
• 01:51and having the experience of giving
• 01:54back or coming for clinical care.
• 01:57And sometimes those stories have
• 02:00stretched over a decade or so,
• 02:03an individual or a family looking back at
• 02:07the impact 20 years before coming to us,
• 02:11coming to give us the opportunity
• 02:14and the honor to help them on the
• 02:17impact that has made over time.
• 02:20And it struck a number of us that we're
• 02:22always very grateful to hear that,
• 02:24and we're very grateful to hear
• 02:26how we've made an impact.
• 02:28But we want to actually be able to tell
• 02:31everyone that's been involved with us,
• 02:33in whatever way you've been involved with us.
• 02:35How you've made an impact on our community
• 02:39and this department and the many,
• 02:41many ways that you shape careers,
• 02:44That you shape careers by your support,
• 02:48your financial support,
• 02:50by your colleagueship,
• 02:51by the ideas you give us,
• 02:53by the networks that you help us make.
• 02:56And we hope this afternoon that you'll
• 02:58be able to hear a number of those
• 03:00nodal points where an individual,
• 03:02wherever they are in their career,
• 03:05has actually made a transition because of
• 03:09being a contribution from our associates,
• 03:11from a mentor,
• 03:13from an individual.
• 03:15We are all part of a community and we
• 03:18are all part as we need to support one
• 03:21another in this difficult but at the
• 03:24same time remarkably rewarding work in
• 03:26child and adolescent behavioral health.
• 03:29So listen to our gratitude this afternoon to
• 03:32you and to the stories that we will tell you.
• 03:37We'll look forward to also having discussion.
• 03:39We're going to divide up into four panels,
• 03:41as you may have seen in the agenda,
• 03:44And so we'll have time for
• 03:46discussion and questions.
• 03:46And indeed, besides telling you our stories,
• 03:49which is a tremendous amount of fun,
• 03:51being able to engage with you
• 03:53and ask your your questions,
• 03:54your your concerns is also
• 03:57extraordinarily rewarding for us.
• 03:58So please, you can send them in the chat,
• 04:01you can raise your virtual hand,
• 04:03you can just speak up,
• 04:06but that's our format.
• 04:07And then at the end of the panels,
• 04:09we'll have four panels.
• 04:11We'll have a brief break in the
• 04:13middle and then at the end,
• 04:14we invite you to join any breakout room with
• 04:17each of the panelists as you as you like.
• 04:19We hope you will, we will be available to
• 04:22move you from breakout room to breakout room.
• 04:25But but that again is the format.
• 04:28So with that,
• 04:30I think we'll turn to our first panel.
• 04:33And Krista,
• 04:34you're still admitting folks in, right?
• 04:37Great.
• 04:37OK,
• 04:38Thank you.
• 04:39And so our first panel is a panel
• 04:42where we're really you'll hear from a
• 04:44number of our clinical
• 04:45faculty and clinical fellows.
• 04:47And let me just tell you
• 04:49who you hear from panel.
• 04:51You'll hear from Doctor Aarti Basilopoulos,
• 04:55who is an assistant professor and
• 04:58pediatric health psychologist
• 04:59and also the Yale Site Director
• 05:02for our Comfort Ability program,
• 05:04which is about chronic pain.
• 05:07You'll hear from Carrie Epstein,
• 05:09Assistant Clinical Professor and
• 05:10also Co Director of the Yale Center
• 05:13for Traumatic Stress and Recovery.
• 05:15The next speaker will be Carla Marin.
• 05:18Dr. Carla Marin,
• 05:19who is an assistant professor and
• 05:21Licensed psychologist as well as
• 05:23the in the Yale Child Studies Center
• 05:25Anxiety and Mood Disorder program.
• 05:27And then Amanda Calhoun.
• 05:28Dr.
• 05:29Calhoun is our Chief resident in Child
• 05:32Psychiatry in the SOLNIT Integrated Program.
• 05:36So let me turn our panel or turn
• 05:38it over to our panelists.
• 05:40And Aarti,
• 05:41may I turn to you?
• 05:44Yes, absolutely. Hi, everyone.
• 05:46I'm so grateful to be starting us off today.
• 05:49My name is Aarti, just like Linda mentioned,
• 05:52and I'm a pediatric health psychologist,
• 05:54which really means that I focus on the
• 05:56intersection of health and behavior,
• 05:59really on how we can adjust
• 06:00to medical conditions,
• 06:01but also how behavior can really impact
• 06:04physical change in physical health.
• 06:06My interest in this started in grad school,
• 06:09but really blossomed into two specific
• 06:11areas while I was in residency.
• 06:14While I was at Hopkins,
• 06:15I was exposed to paediatric Chronic
• 06:18pain and Paediatric Functional
• 06:20Neurologic Symptom Disorder,
• 06:22or FNSD for short.
• 06:23These two conditions are quite different,
• 06:26but their impact on kids,
• 06:28teens and their families are profound.
• 06:31I I can talk about stats or numbers,
• 06:34but I would love instead today
• 06:36to talk about two such kids,
• 06:38one in each of those categories,
• 06:40with each of those conditions and kind of
• 06:43their experience and then our work together.
• 06:46So for one, there's a 17 year old young
• 06:49man who had chronic daily migraine.
• 06:52He was in the 11th grade at an
• 06:55incredibly competitive boarding school,
• 06:58previously very high achieving.
• 07:00He missed a good chunk of his 10th
• 07:02grade year because of his migraines
• 07:04and he unfortunately was starting
• 07:06off his junior year in the same way.
• 07:08So when I met him in fall of his junior year,
• 07:12he'd been missing a lot of school.
• 07:13He'd been going home because of
• 07:15his headaches and migraines.
• 07:17His school staff weren't sure what to do.
• 07:19His parents were at a loss and it felt
• 07:22like all the things he'd worked for
• 07:24were kind of falling apart around him.
• 07:26And we move over to a 13 year
• 07:29old girl with FNSD.
• 07:30She was lovely and vibrant,
• 07:33was involved in karate and loved teaching
• 07:36the younger kids in in her karate class.
• 07:40But she developed FNSD and her
• 07:43specific type of FNSD were these
• 07:45episodes that looked like they were
• 07:47seizures but they weren't epileptic.
• 07:50So everything in her body was safe.
• 07:52Her imaging her lab work was good and
• 07:55clean and nothing dangerous was going on,
• 07:57but these episodes were so challenging,
• 08:00her school didn't again know what
• 08:02to do and so she was home for
• 08:05about two months before I met her.
• 08:07Her mom had been told by an outside
• 08:09hospital that she will need to
• 08:11quit her job or have some sort of
• 08:13family medical leave because her
• 08:14daughter will never be the same.
• 08:18I had the pleasure of working with both
• 08:20of those teenagers and their families,
• 08:22and their life completely shifted.
• 08:25They allowed me to join with them.
• 08:27He the 17 year old completed
• 08:29high school and actually,
• 08:31about a year after our work together,
• 08:32his mom sent me a lovely e-mail
• 08:35with his college essay that
• 08:37explained that unexpectedly,
• 08:39his psychologist helped him understand
• 08:41how to manage his migraines.
• 08:43The young girl was able
• 08:45to finish middle school,
• 08:46start high school and jump
• 08:48right back into karate and
• 08:50doing all the things that are much
• 08:53cooler than than I am or that
• 08:55I can understand their lives.
• 08:57Kind of fell off the track for
• 09:00a bit but were able to go right
• 09:03back on and be fulfilling.
• 09:05I don't think that them falling off
• 09:08course or misinformation by anyone at
• 09:10any other hospital system was intentional.
• 09:13These things are complex and
• 09:16access to conferences,
• 09:18access to colleagues and collaborators is
• 09:20really the way that we remain up to date.
• 09:24I have been fortunate through
• 09:25faculty development funds to be able
• 09:27to attend conferences where I am
• 09:30on leadership committees for FNSC
• 09:31and for disseminating information
• 09:33that is based in science.
• 09:34I have been able to meet with
• 09:37colleagues at other hospitals and
• 09:39medical systems that implement the
• 09:41same pain workshop that I direct here.
• 09:44I was able to earn a pilot internal
• 09:48grant to kind of improve my research
• 09:52skills and then apply for an NIH funded
• 09:56grant on pediatric FND with colleagues.
• 09:59That ended up becoming the first
• 10:01and only pediatric FND study funded
• 10:03to date by the NIH.
• 10:05And these are all such exciting
• 10:07and wonderful things that I would
• 10:08not have been able to do and would
• 10:10not be able to have the reach that
• 10:12I have because of the support of
• 10:14those internally and externally.
• 10:16So thank you and I I am so excited to
• 10:19continue to provide these families and
• 10:22join with them in order to improve their,
• 10:24their lives and their kids lives.
• 10:27With that,
• 10:28I passed it along to Carrie for
• 10:30the fantastic work that she does.
• 10:32Thank
• 10:32you so much.
• 10:35I'm Carrie Epstein. As I said, I'm.
• 10:37I'm the Co director of the Yale
• 10:39Center for Traumatic Stress and
• 10:40Recovery at the Child Study Center.
• 10:42It was a wonderful story to follow up.
• 10:45I'd like to tell you the story
• 10:47of the power of partnership.
• 10:49So way back at the start
• 10:50of my career in the 1980s,
• 10:52I was working as a psychotherapist in the
• 10:55first paediatric AIDS clinic in the country.
• 10:58And back then,
• 10:59pediatric AIDS was really terrifying.
• 11:01It was stigmatizing and all
• 11:03too often it was fatal.
• 11:04And there were days when I felt really lost,
• 11:07not sure how or even if I
• 11:10could help my patients.
• 11:11And one of my patients was 8 year old Johnny
• 11:14who was really wise beyond his years.
• 11:16And when I asked him about his
• 11:18experience of being a child with AIDS,
• 11:20you know, he told me, you know,
• 11:22people look like right through me,
• 11:24like I don't exist,
• 11:25and they turn the other way
• 11:26when they see me coming.
• 11:28And in that moment,
• 11:29as I listened,
• 11:29it was the first time I think
• 11:31that I realized that I began
• 11:33to understand my own feelings.
• 11:34Working with children who are
• 11:36really suffering sometimes made
• 11:38me feel helpless and hopeless,
• 11:40and sometimes they felt tempted
• 11:42to protect myself from those
• 11:44feelings by turning away.
• 11:46And Johnny's insight really showed
• 11:48me that I had to fundamentally change
• 11:51my perspective and instead focus
• 11:53my professional energy on finding
• 11:56ways to decrease the isolation
• 11:58and suffering of traumatized
• 12:00children like Johnny and develop
• 12:02therapeutic approaches to help
• 12:04them heal and recover and overtime,
• 12:06that's just what I did.
• 12:07So Fast forward to about 14 years
• 12:09ago when I joined the trauma
• 12:12team at the Child Study Center.
• 12:14We've developed a ground breaking
• 12:16mental health treatment,
• 12:17a therapy called the Child and Family
• 12:20Traumatic Stress Intervention or CF TSI.
• 12:22Our bottle focuses on helping
• 12:24children communicate more effectively
• 12:26with their caregivers about their
• 12:28trauma reactions,
• 12:29teaching them coping strategies
• 12:30to decrease those reactions and
• 12:32really helping them recover.
• 12:34From the outset,
• 12:35we were committed to research
• 12:36because we wanted to be absolutely
• 12:38sure that our intervention worked.
• 12:40We wanted to know that CFTSI was
• 12:43effective in reducing children's
• 12:45symptoms after traumatic experience
• 12:46and interrupting PTSD from developing.
• 12:49And that's exactly what we found.
• 12:51Our model is brief, 5 to 8 sessions.
• 12:54It's powerful and effective.
• 12:56It works. So there we were.
• 12:58We had an important,
• 12:59effective way to help children
• 13:01who undergone trauma,
• 13:02but the only way we had to get it out
• 13:04there in the world was by word of mouth.
• 13:06We knew how to research,
• 13:08we knew how to develop a treatment method,
• 13:10but we still didn't have the
• 13:12skill set to connect with a much
• 13:14broader number of child therapists.
• 13:16And then something very
• 13:17critically important happened.
• 13:18I It was introduced to a woman named Nancy,
• 13:21and she started peppering me
• 13:23with questions about my work.
• 13:24She wasn't an expert in the field,
• 13:26but she was deeply interested.
• 13:28You know, how did the treatment work?
• 13:29What did the evidence tell us?
• 13:31You know, how is it playing out with kids,
• 13:33participate in the treatment?
• 13:34And toward the end of our conversation,
• 13:37Nancy told me that she had an idea for how
• 13:39to unlock the potential of our treatment
• 13:41model by getting it out to a vastly
• 13:43greater number of children and families.
• 13:45And a few days later, Nancy introduced
• 13:47me to a woman named Teresa Huizar.
• 13:50Teresa is an internationally
• 13:52recognized expert in child abuse,
• 13:54and she's the CEO of a professional
• 13:57membership organization that includes a
• 13:59network of 1000 centers that provide services
• 14:02to children impacted by trauma and abuse.
• 14:05So what that means is that if
• 14:07Teresa supports an approach to
• 14:08therapy for traumatized children,
• 14:10thousands of people learn about it.
• 14:12And because of Nancy,
• 14:14Teresa really understood the
• 14:15importance of our work.
• 14:17So once Teresa connected with us,
• 14:19the demand for trainings in our
• 14:21treatment ramped up dramatically
• 14:23and our reach and influence in the
• 14:25United States became so strong and
• 14:27so vibrant that request for training
• 14:28now come from all over the world.
• 14:31The connection that Nancy made
• 14:33for us changed my career and the
• 14:35trajectory of our treatment approach.
• 14:37And it's meant that thousands and thousands
• 14:39of children have been given the help
• 14:41they need after experiencing a trauma.
• 14:43And I want to mention one last thing today,
• 14:45which is that an associate and a recent
• 14:47donor and partner to our work shared
• 14:49with us that he had gone through his
• 14:52own significant traumatic experience.
• 14:53And that in addition he's the
• 14:56child of Holocaust survivors.
• 14:57And he told us that seeing the impact of
• 15:00his parents inability to address their
• 15:02trauma inspired him to address his own.
• 15:05And at the time,
• 15:06I think he couldn't have fully
• 15:08known that his description of his
• 15:11personal and family experience it
• 15:13really so movingly and so deeply
• 15:16articulates the mission of our work.
• 15:18And as I'm talking about
• 15:19the power of partnerships,
• 15:20I think I'd be remiss if I didn't
• 15:22mention some of our partnerships that
• 15:23have been so meaningful to our work,
• 15:25including the Harris Foundation
• 15:27and the Israel Foundation.
• 15:29With supports of many partners in the
• 15:31extended child study center community,
• 15:34we've had the opportunity to turn toward
• 15:36rather than away from the children and
• 15:38families who we're all concerned about.
• 15:40And as we've learned more,
• 15:42we've also grown more effective in
• 15:44our efforts to develop effective
• 15:46treatment approaches that help children
• 15:48recover from the impact of trauma
• 15:50that could otherwise last a lifetime.
• 15:53So it's really in my mind,
• 15:54it's the power of partnership that
• 15:56brought us where we are today.
• 15:58And it's the power of partnership that
• 16:01will take us through the next phase
• 16:03of our work as we work to bring CF
• 16:05TSI to additional and new communities
• 16:08not only across the United States,
• 16:10really been around the world.
• 16:11So this is the work that I'm
• 16:13passionate about and
• 16:14I'm so grateful to our partners
• 16:15for supporting this work.
• 16:17And I really want to thank you for letting
• 16:19me share this story with you today.
• 16:22And now you'll be hearing
• 16:23from Doctor Carla Marron,
• 16:24who's assistant professor and
• 16:26licensed psychologist and in the
• 16:28Anxiety and Mood Disorders Program.
• 16:32Thank you, Carrie. Good afternoon, everyone.
• 16:35Yes, I'm Carla Marine,
• 16:37an assistant professor.
• 16:38We're in the Anxiety and Mood
• 16:40Disorders program where I provide
• 16:42clinical services and where
• 16:44I'm also engaged in research.
• 16:47Before I tell you about why
• 16:49I do the work that I do,
• 16:50I would like to briefly share a personal
• 16:54story about a very close family member.
• 16:56She is 12 years old,
• 16:59first generation Hispanic immigrant
• 17:01whose parents do not speak any English.
• 17:04So a school trip was planned to
• 17:06visit the Vizcaya Gardens in Miami,
• 17:09which are really beautiful.
• 17:10I don't know if any of you have visited,
• 17:13but she was petrified to go on
• 17:17the school trip and after weeks
• 17:19of really trying to work up the
• 17:22courage to speak to her teacher,
• 17:25she finally approaches her and simply
• 17:28expresses that she's feeling very sad,
• 17:31does not want to go on the school trip now.
• 17:34She also shared with me that she
• 17:37didn't want to go because there
• 17:39would be too many kids that she
• 17:41didn't know and she would be really
• 17:44uncomfortable with this anyway.
• 17:46Her teacher told her you'll be all right
• 17:49and so she went because she's compliant,
• 17:53but she also hated it.
• 17:55She was riddled with so much anxiety
• 17:58following that school trip that she
• 18:01started to experience pretty significant
• 18:04stomach aches on most school days.
• 18:08Again,
• 18:08this 12 year old girl tells her teacher
• 18:12a few months later that she was lonely,
• 18:16but again her teacher did not
• 18:19recognize the signs and told her why
• 18:23don't you try making some friends?
• 18:26Well guess what?
• 18:27This 12 year old girl is my 41 year
• 18:31old sister and 20 years passed before
• 18:34she received adequate care for her
• 18:37debilitating anxiety and depression.
• 18:40And you know,
• 18:41although it has been decades since
• 18:43this incident and we have made
• 18:45significant strides in helping to
• 18:47identify and refer children with anxiety
• 18:50and other mental health concerns,
• 18:52what strikes me now as a clinician
• 18:54and as well as many of my other
• 18:57colleagues that I speak to,
• 18:59the clinician and researcher,
• 19:01is that we continue to see
• 19:03similar stories in 2023,
• 19:04that is children not being referred or
• 19:07being able to access mental health services,
• 19:11particularly children from
• 19:13minority backgrounds.
• 19:15So yes, this is partly what drives my work.
• 19:19I have and feel privileged to be
• 19:22surrounded by so many talented
• 19:24colleagues who similarly share this passion.
• 19:28And most recently I was honored
• 19:31to receive the Viola Bernard Award
• 19:33to pilot a digital intervention
• 19:35that incorporates science based
• 19:37tools to teach parents how to help
• 19:41their child with anxiety.
• 19:43And what excites me about those this
• 19:45work is that it is specifically
• 19:48designed for Hispanic mothers of
• 19:51children with anxiety disorders.
• 19:53I am really excited about the project
• 19:56because it will allow me and our team
• 19:58to focus our work on learning how we
• 20:01can improve access to mental health
• 20:03care to so many children who need it.
• 20:06In fact, there's been,
• 20:07you know,
• 20:08papers showing that Hispanic children
• 20:11are particularly at risk for anxiety,
• 20:13which, by the way, is the most
• 20:16common mental health, the most
• 20:18prevalent mental health concern.
• 20:23I'm also really excited to start
• 20:25this project because it will give
• 20:28participants a voice in shaping
• 20:30the intervention to ensure that it
• 20:33is being delivered in a culturally
• 20:35sensitive way and that it really,
• 20:37you know, speaks to families.
• 20:40And so, of course,
• 20:42we hope that this initial pilot
• 20:44work study will lay the groundwork
• 20:46for our larger project where again,
• 20:48we can learn how not only to
• 20:51improve these treatments that
• 20:52we know work really well,
• 20:54but how to best disseminate them to
• 20:57reach as many families as possible.
• 21:00So thank you very much for your time.
• 21:04And now I think I'll pass it
• 21:07along to Doctor Amanda Calhoun.
• 21:12Thank you so much.
• 21:14I'm going to start us out with a quote.
• 21:17When we speak, we are afraid our
• 21:20words will not be heard or welcomed.
• 21:22But when we are silent,
• 21:24we are still afraid.
• 21:26So it is better to speak Audrey Lord.
• 21:30Growing up as a black
• 21:31girl in a predominantly white school,
• 21:33I remember being aware of
• 21:35racism as early as kindergarten.
• 21:37I remember realizing that my brown
• 21:39skin and dark coily hair were not
• 21:41the American standard of beauty.
• 21:43As I grew older,
• 21:44I watched family members receive poor
• 21:46care in the emergency department.
• 21:48I was embarrassed to go places
• 21:50because I was regularly assumed
• 21:51to be the mother of my 4 year old
• 21:54sister when I was only 13 years old.
• 21:57I remember years ago when my
• 21:59little sister's best friend came
• 22:01home from kindergarten in tears.
• 22:03Her white classmates said that her
• 22:05skin was too dark to play with them.
• 22:09A few years
• 22:09ago, I cried on my way to work in the
• 22:12hospital after I talked to my parents.
• 22:14My older brother,
• 22:15who suffers from severe autism,
• 22:17had been thrown on the ground at
• 22:19the Science Center in my hometown.
• 22:21Even though his paraprofessional
• 22:23had screamed at the security guard that
• 22:25he was autistic and not harming anyone,
• 22:28the security guard did not listen.
• 22:30My brother was handcuffed so roughly
• 22:33that it left bruises on his wrists.
• 22:36These painful interactions impact the mental
• 22:39health of black children and families
• 22:42in profound ways that now I am studying.
• 22:45I have the words now for some of these
• 22:49experiences like adultification,
• 22:50the assumption that black girls are
• 22:53less innocent and require less emotional
• 22:55support than white girls like massage noir,
• 22:58the mistreatment of black women and
• 23:00girls that is distinct from the racism
• 23:03black men experience and the sexism
• 23:05that non black women experience.
• 23:07I know now that my black families
• 23:10experience of poor care in the emergency
• 23:12department was not just anecdotal,
• 23:14it is documented.
• 23:15I know now that experiences of anti
• 23:18black racism are tied to suicidality and
• 23:21black youth suicide rates are increasing
• 23:23faster than any other racial ethnic group.
• 23:26And I know now that individuals with autism,
• 23:30especially black individuals with autism,
• 23:33are more likely to be harmed
• 23:35and killed by law enforcement.
• 23:38Yet the mental health effects
• 23:40of anti black racism,
• 23:42despite its demonstrable impact
• 23:43on health and well-being,
• 23:45remain understudied,
• 23:46especially in the field of child
• 23:49psychiatric research.
• 23:50Research centering adverse mental health.
• 23:52The outcomes of black children
• 23:54usually cites poverty or lack of
• 23:57access to care without considering
• 23:58the independent impact of racism,
• 24:01even when economic resources are not lacking.
• 24:05When I received the 2022 Pilot
• 24:07Research Award for Yale Child Study
• 24:10Center trainees for my study proposal
• 24:12entitled The Mental Health Sequella
• 24:15of Anti Black Racism in Children,
• 24:17it honestly affected my entire
• 24:19career trajectory.
• 24:20I proposed my study as the basis for
• 24:23a dissertation and I'm now pursuing
• 24:25APHD at the Yale Graduate School of
• 24:27Arts and Sciences and Doctor Linda
• 24:29Mays as my senior thesis advisor.
• 24:32And I cannot emphasize
• 24:33enough how powerful and important
• 24:35it is for me as a trainee to have
• 24:38the chair of my department serve as
• 24:40such a strong mentor and advocate.
• 24:43Because of how much support
• 24:44I received from my research,
• 24:45I was able to put forth a
• 24:47competitive application and receive
• 24:49the NIH Law Repayment Award.
• 24:50But this is just the beginning.
• 24:52My research will lay the groundwork
• 24:54for a whole line of investigations
• 24:57examining the effects of anti
• 24:59black racism in children and
• 25:01developing innovative interventions.
• 25:03This year I was also awarded the Viola
• 25:05Bernard HealthEquity Fellowship and
• 25:06will be using this funding to hold a
• 25:08Black Youth Clinical Case Conference
• 25:10series at the Yale Child Study Center.
• 25:12The clinical case conferences will
• 25:14be held monthly from January to
• 25:16June and will lay the groundwork
• 25:18for a new Black Culture and Identity
• 25:20console and Liaison team which we
• 25:22plan to present in fall of 2024.
• 25:24The conversations generated by these
• 25:26case conferences and the work of this
• 25:28console team will be transformative
• 25:30for the mental health field.
• 25:32As a current Yale child psychiatry fellow
• 25:35and member of the Yale College class of 2011,
• 25:39one of the reasons why I chose and
• 25:41continue to choose Yale is because
• 25:43it is an academic institution that
• 25:45truly wants to produce leaders.
• 25:47Yale pushes us to ask difficult questions,
• 25:50think critically,
• 25:51and produce creative ideas.
• 25:53And the Yale Child Studies Center
• 25:54not only wants to produce leaders
• 25:56in research and science,
• 25:58but the department also wants to
• 26:00produce clinician leaders who are
• 26:03committed to making the world a better
• 26:06place for children and for families.
• 26:08My researchers that are twined
• 26:10with my clinical work.
• 26:11But at the end of the day,
• 26:12this work isn't for me.
• 26:14It's for the kindergartner,
• 26:16like my sister's friend who becomes
• 26:18sad and withdrawn for weeks after
• 26:20their classmates exclude her
• 26:22from play based on skin color.
• 26:23It's for my 10 year old patient
• 26:25who developed suicidal thoughts
• 26:27after her neighbors told her that
• 26:29dark brown skin was ugly.
• 26:30It's for my high schooler patient
• 26:32who attempted suicide because of
• 26:34racist ostracism from peers and
• 26:37excessive punishment from teachers in
• 26:39a predominantly white prep school.
• 26:41I'm so thankful to be supported by
• 26:43the Yale Child Study Center and
• 26:44to speak with you all here today.
• 26:46My work is thought provoking and innovative,
• 26:49but it is also urgent and life saving.
• 26:53Thank you Fernando.
• 26:55Thank you everyone.
• 26:57We're now open for questions,
• 27:00questions from our audience. I
• 27:06think one question that has come in
• 27:08just to get us started is we all know
• 27:11that there's a certainly a tremendous
• 27:14increase in mental health needs.
• 27:16And I wondered if the question is,
• 27:19would the panelists comment on
• 27:20various ways and your efforts,
• 27:23we're trying to address those or you are
• 27:25trying to address those increase in needs.
• 27:30Anyone want to start that
• 27:36Gary, please.
• 27:40Thank you, Linda.
• 27:42So you know there is really a a very
• 27:45pretty serious child mental health
• 27:47crisis going on higher acuity wait list.
• 27:50I think that there's no easy solution,
• 27:53but the good news is we have
• 27:55ways to start to address it.
• 27:56I think one way we have to address
• 27:58the wait list that unfortunately
• 28:00characterize the mental health crisis.
• 28:02This is the great news about our child and
• 28:05family traumatic stress intervention being
• 28:07brief and powerful that because it's brief,
• 28:10because it's a powerful and effective it can
• 28:13help reduce the need for longer term therapy.
• 28:15It can help alleviate long wait
• 28:18lists and increase access and allow
• 28:20programs to serve more children.
• 28:22And so that can be really helpful.
• 28:24And in order to do this,
• 28:25we need to equip clinicians to build
• 28:27the skill to to do the work and we
• 28:29can get them there, for example,
• 28:30by training them in our model.
• 28:32And so the good news is,
• 28:34is that we found even when we're training
• 28:36clinicians are new to the field or have
• 28:38been around alone for quite a while,
• 28:40they're both highly effective in it.
• 28:41So that's,
• 28:42it's one of the ways that our
• 28:44work is hoping to address that.
• 28:49Thank you. Anyone, anyone else?
• 28:53Yeah, I would jump
• 28:54in. You know, I think I really appreciate
• 28:57the context of of talking about increasing
• 28:59mental health needs and the black,
• 29:01you know, the youth suicide crisis
• 29:03and the youth mental health crisis.
• 29:05But I also think it's important
• 29:07to note that for black youth,
• 29:09they've been in crisis for 20 years.
• 29:11So this isn't new for black youth
• 29:13and actually you know, suicide rates
• 29:16have been increasing and I think,
• 29:18you know, we'll actually look
• 29:19at data from 2019 to 2020,
• 29:21it was found that actually
• 29:23white and Asian children,
• 29:25their suicide rates remain the
• 29:27same or declined and black and
• 29:29Latin a Latin X children,
• 29:30their suicide rates continue to increase.
• 29:32So I think it's really important
• 29:34when we're thinking about this,
• 29:36you know, youth mental health crisis.
• 29:38We need to really think about different
• 29:40minoritized groups and really make
• 29:42sure that the things that we're doing,
• 29:44the interventions that we're doing
• 29:46are not just tailored to A1 size
• 29:48fits all model and certainly not
• 29:50just tailored for white children,
• 29:51but tailored for the specific needs of
• 29:54minoritized groups and populations,
• 29:56which I think is one of the things
• 29:58that the Yale Child Studies Center
• 29:59obviously is trying to do it to do
• 30:01with all this here and thinking about,
• 30:03you know, OK.
• 30:04So some interventions may work
• 30:05for all kids or most kids,
• 30:07but we may may need targeted.
• 30:08We definitely need targeted interventions,
• 30:11as Doctor Marin mentioned,
• 30:12for different groups.
• 30:14And I think what that looks like
• 30:15is we're bringing in experts
• 30:16from those groups that are,
• 30:17we have here the Child Study
• 30:19Center to pilot those programs.
• 30:21And so I think it's a really
• 30:23important question.
• 30:23And I think I'm so glad that, you know,
• 30:25the youth mental health crisis is out there.
• 30:27It's out there in the media.
• 30:28But it's also important to
• 30:30recognize that for some groups,
• 30:31specifically black children,
• 30:32this isn't new.
• 30:33Thank
• 30:35you, Tom.
• 30:44Obviously there's a great need
• 30:47by children and families and
• 30:49they're great providers called
• 30:50the Yale Child Study Center.
• 30:52How did the two get together?
• 30:56It's a great question, Tom and I
• 30:58may I may I be sure you're asking
• 31:01how do we improve access, right.
• 31:06How do we improve access to US
• 31:07and access for services generally?
• 31:16Anyone want to take that?
• 31:19I can kind of start us
• 31:20off. Oh, sorry, no,
• 31:21no, go ahead. Go ahead, already you're good.
• 31:24So one way kind of in particularly
• 31:25in my work in pediatric psychology IT,
• 31:28it decreases kind of one of the stops.
• 31:30So I am integrating A
• 31:31variety of medical clinics.
• 31:32So kind of when they present for
• 31:35their neurology clinic appointment,
• 31:37it's not just that they're seeing
• 31:38their neurology provider but also
• 31:40myself as a multidisciplinary clinic.
• 31:42And so kind of being able to get that
• 31:45comprehensive view as a one stop shop
• 31:47really decreases barriers from kind of
• 31:49scheduling and waiting and getting in
• 31:51and instead getting something there
• 31:53and now where the families are and
• 31:56really meeting them where they're at,
• 31:57which has been wonderful.
• 32:01So embedding, embedding where
• 32:02families come, that's one way, Carla.
• 32:06Yeah. So I I just wanted to add that I
• 32:09I think another way is to leverage the
• 32:11digital tools that we have currently
• 32:14available to us even just like now right
• 32:16being on Zoom and I know that we're
• 32:19providing telehealth services to many
• 32:21families who are not able to either
• 32:24you know have transportation here.
• 32:26But again you know trying to think about
• 32:31or excuse me going beyond sort of Zoom
• 32:34or Intellotherapy and thinking about
• 32:36developing other types of digital tools
• 32:39that again allow a greater reach and
• 32:41and tools that are again science based,
• 32:43you know that we know provide relief to
• 32:47so many of these children and families.
• 32:50So I again you know it's my hope
• 32:52of course and the work that I'm
• 32:54involved in that hopefully you know
• 32:57we'll we'll we'll see this.
• 32:59But I mean again that's just some some
• 33:01other thought that I wanted to offer
• 33:05anyone else. Carrie,
• 33:11you're muted Carrie, I
• 33:13think it's such an important question.
• 33:14I I think building on what my
• 33:18colleagues just spoke about,
• 33:19I think that there are a few ways we've
• 33:20been also trying to accomplish this.
• 33:22One is that our our,
• 33:25our trauma center actually goes does
• 33:28outreach to families in communities.
• 33:31I'm going into folks homes to touch
• 33:33base with families to connect with them
• 33:36and to make the bridge into from the
• 33:39actual community and bridging into our
• 33:42the the services that we can offer.
• 33:44That's one thing we do,
• 33:44and there's more to say about that.
• 33:46The the telehealth piece, we actually,
• 33:49through the pandemic really had to look
• 33:51at and we did a study about whether we
• 33:53could do our treatment model via telehealth.
• 33:55And the great news is that the study shows
• 33:57that we have literally the same outcomes,
• 33:59maybe a little bit better through telehealth.
• 34:02Look at that.
• 34:03And I think that's about
• 34:04having less stressors maybe,
• 34:06but coming in.
• 34:06And then the final thing I really
• 34:09think about is also looking about
• 34:11really challenging oneself to look at.
• 34:13And I, Amanda,
• 34:14I was thinking about what you said
• 34:16is that it is our treatment model
• 34:18working for different families,
• 34:19communities,
• 34:19people from different backgrounds,
• 34:21and we've been looking at that.
• 34:23We want to continue to looking at that,
• 34:25to really challenge ourselves
• 34:25to how do we need to adjust,
• 34:27adapt and tweak models and learn from
• 34:30colleagues with expertise to know
• 34:31that a treatment is going to resonate
• 34:33with all the families we work with.
• 34:38And I would just add,
• 34:39you know, sort of like I was saying
• 34:40and what Yale is renowned for,
• 34:42we need to get creative. You know,
• 34:44when people think about child psychiatrists,
• 34:46they're thinking about,
• 34:47you know, someone in a office
• 34:49and maybe it's boring to them.
• 34:51And these are kids, you know,
• 34:52we need to engage them.
• 34:53And so, you know, most kids will
• 34:55never see a child psychiatrist.
• 34:56And we need to think about, you know,
• 34:58how are we going to reach kids?
• 34:59And, you know,
• 34:59I don't want to put him on the spot,
• 35:01but I'm going to put him on the spot.
• 35:02Doctor Comer is here.
• 35:04And I think thinking about,
• 35:05you know, how are we reaching
• 35:07out to schools and you know,
• 35:08his amazing work that is looked at,
• 35:10what are the experiences that kids,
• 35:12the positive experiences
• 35:13that kids are not getting,
• 35:15you know, that they need to get?
• 35:17And how do we partner with teachers,
• 35:19you know, schools, community workers,
• 35:22you know, pediatricians as we already do,
• 35:25But all these touch points that kids
• 35:28are interacting with to reach them.
• 35:30And then once we reach them,
• 35:32are we doing things that are
• 35:34causing them to fall out of care?
• 35:35I mean, frankly,
• 35:36I've talked to a lot of my kids
• 35:37and I've said, you know, why?
• 35:39You know, when I say my kids,
• 35:41I mean my patients,
• 35:41I call them my kids.
• 35:42But
• 35:43I say, you know, why don't you like therapy?
• 35:45Why don't you go to therapy?
• 35:46And they've told me they've had a lot
• 35:48of racist experiences in therapy.
• 35:49And so I think we need to name that.
• 35:51And it's going to be very
• 35:54important that children, you know,
• 35:55of minoritized backgrounds are feeling
• 35:57comfortable in the therapeutic
• 35:58spaces because we bring them in,
• 36:00we tell them about child psychiatry,
• 36:02and they have a poor experience.
• 36:03They're probably not going to come back.
• 36:05And so thinking about all those things
• 36:07and being able to interrogate ourselves
• 36:09and our own procedures and our own
• 36:11policies and our own behaviors in the
• 36:13therapeutic space will be important.
• 36:26Doctor Comer,
• 36:29you're on mute, Tim.
• 36:32Yeah. No, I can only
• 36:35agree that it is terribly important to
• 36:38get to the all the people that children
• 36:41come in contact with who support
• 36:43their development and functioning.
• 36:45But it's very, very hard because in
• 36:49ways just the education alone feel
• 36:56the the basic problem is that the the
• 36:59field itself has not paid attention
• 37:02to development and mental health.
• 37:05And so you're working with educators
• 37:07who mean well, who want to do well,
• 37:10but they have not had the experience.
• 37:12So our they have not had the
• 37:14focus on child development and
• 37:16functioning and mental health.
• 37:18And so we're trying to look at how
• 37:23you can get that kind of preparation,
• 37:25that kind of introduction even at the
• 37:28at the pre service level and then make
• 37:32it possible for mental health people
• 37:35to work at the pre service level to
• 37:38help those people who are going to
• 37:42be working with children think child
• 37:44development and functioning before they
• 37:47even have their basic training and
• 37:50and development in their discipline.
• 37:53But it's hard.
• 37:54It's very hard.
• 37:55But I I think we have to keep
• 37:57doing it because I don't see any
• 37:59other way because they'll never
• 38:01be enough psychiatrists,
• 38:03psychologists
• 38:06to to provide the kind of
• 38:09support we need for the mental
• 38:11health problems we have today.
• 38:14But agree that it's very important.
• 38:16Thank you. Before I turn to Doctor Landeros,
• 38:19I just want to say too that several
• 38:22of you mentioned pediatricians and
• 38:24one of the things we're also doing
• 38:27is trying is training pediatricians
• 38:29and frontline behavioral healthcare.
• 38:31We're becoming a training site
• 38:34so that we can at least help our
• 38:37pediatric colleagues have some skills
• 38:38that they very much are asking for.
• 38:41Doctor Linderos,
• 38:44I just wanted to highlight within
• 38:47the the Mood Disorders Clinic,
• 38:52all of the different researchers
• 38:53within the Child Study Center
• 38:54that are engaged in research
• 38:58pursuing this have at.
• 39:00We've actually come together.
• 39:02We've created a working
• 39:05group where we've put,
• 39:06made ourselves available to the
• 39:09schools within Connecticut.
• 39:12And slowly but surely we're
• 39:13getting a lot of traction.
• 39:14And we're having
• 39:16experts in the field,
• 39:18us go into the schools and talk
• 39:20to the teachers and
• 39:21ask them what it is that
• 39:23they need and how it is that we can help
• 39:25them. Not only in an effort to help
• 39:28the recruitment so that people can
• 39:30come to us and help us answer all of
• 39:34these questions that we all have, but
• 39:37because we are part
• 39:38of the community and
• 39:40you know this
• 39:41is, this is part of what
• 39:42we need to do. And So
• 39:45what we do
• 39:45for example is that we've got imaging studies
• 39:48looking at the brain when
• 39:50someone is depressed. We have
• 39:53experimental treatments that have
• 39:55been shown to be useful in adults
• 39:58like ketamine or ischetamine.
• 40:00And through our partnership with big
• 40:03Pharma and through other foundations,
• 40:06we've been able to find and
• 40:09get evidence based. Result
• 40:13to show if it works
• 40:14or if it doesn't work in kids.
• 40:17Long story short, our RO one looking at
• 40:19ketamine for treatment resistant
• 40:21depression and one of the really nice
• 40:23things about being a child study center
• 40:25is that we've been able to capture and
• 40:29recruit a wide variety of participants
• 40:33of all ethnic backgrounds of all groups.
• 40:37And so I think that's one of
• 40:39the privileges of working here.
• 40:40And I'll throw it back to you, Linda.
• 40:42Thank you so much. Andy, any other questions?
• 40:49Let's move on to our second panel.
• 40:56And let me just introduce the second panel.
• 40:59In our second panel,
• 41:00we turn to our researchers.
• 41:02Three of our researchers on Doctor
• 41:05Kasha Habarska is the BD Professor,
• 41:08Child Psychiatry,
• 41:09Pediatrics and Statistics in Data Science.
• 41:12She's also the Director of the
• 41:15Toddler Developmental Disabilities
• 41:16Clinic and the Social and Affective
• 41:19Neuroscience of Autism Program.
• 41:21Doctor Tom Fernandez is Associate
• 41:23Professor and Vice Chair for
• 41:24Research for the Department and Co
• 41:27Director of the Tick and OCD Program,
• 41:29and Doctor Alan Gerber is a postdoctoral
• 41:32fellow in the Mcpartland Lab and the
• 41:35Developmental Disabilities Clinic.
• 41:36So I believe, Kasha,
• 41:37may I turn to you first?
• 41:41Yes, thank you.
• 41:42Thank you very much, Linda,
• 41:44for the introduction.
• 41:45It's a great pleasure to be here.
• 41:48And when Tom Allen and I were
• 41:52discussing this panel, we were one,
• 41:55we were we were thinking about, you know,
• 41:57what are the themes that are really
• 41:59important for our clinical research work.
• 42:00And we touch upon 2 mentorship and the
• 42:06inspiration that we get from our patients,
• 42:10inspiration that helps us define
• 42:12what we do and how we do it in
• 42:14in our in our path to discovery.
• 42:19I work with children with autism,
• 42:23babies, toddlers,
• 42:24and in our practice we see many
• 42:28toddlers with unusual characteristics
• 42:31that do not fit the very neat
• 42:35diagnostic criteria and categories.
• 42:38And today I would like to tell you
• 42:40about a new line of research which was
• 42:43inspired by a little girl who as an
• 42:47infant developed some unusual behavior,
• 42:49unusual motor behavior,
• 42:51which we call motor stereotypies.
• 42:54So you might ask yourself what
• 42:57on earth are motor stereotypies?
• 42:59Well,
• 42:59they are rhythmic and repetitive movements.
• 43:02They can involve hands, body or head.
• 43:06And you know we typically see
• 43:09them in autism and and in various
• 43:13neurological conditions.
• 43:15But as we are learning now we they're
• 43:18also often present in children who
• 43:21are otherwise developing typically.
• 43:24And I would like to take this
• 43:27opportunity and and show you a
• 43:29video and and I would like to do
• 43:31it for for two reasons why I'd
• 43:33like you to you to understand the
• 43:34mother stereotypes a little better.
• 43:36But also this video was shared
• 43:39by a family who of a girl who is
• 43:42affected by these mother stereotypes.
• 43:44And the family is very invested
• 43:48in sharing their experiences,
• 43:55invested in disseminating knowledge
• 43:58about mother stereotypes and raising
• 44:01awareness among professionals and and
• 44:04hopefully in the future increasing
• 44:07both understanding of this phenomenon
• 44:09but also understanding improving
• 44:11clinical care for these kids.
• 44:15And I would like to make sure that I can.
• 44:18I'm doing it right, but here we go.
• 44:21All right. Can you see that?
• 44:24So this is, this is a beautiful
• 44:25little girl and he's about,
• 44:27she's about six months old and she
• 44:31started doing these little things
• 44:34which kind of look cute, but actually
• 44:37they're they're stereotype movements.
• 44:38They are accompanied by a lot of motor
• 44:41activity and they were happening many,
• 44:43many times during the day which
• 44:45make parents think that perhaps
• 44:47their little girl has seizures.
• 44:49She was seen by a neurologist
• 44:53and seizures were ruled out.
• 44:54And then when she was a little older and her
• 44:58mother skills became more a little better,
• 45:01she was doing a lot of these
• 45:03kind of I'm calling them happy,
• 45:05happy hands,
• 45:07happy feet movements.
• 45:09They kind of look cute,
• 45:11but if they are repeated many,
• 45:13many times during the day and they
• 45:14do not appear to be functional,
• 45:16this is when begin we begin to
• 45:19worry and this is when we met her.
• 45:21She was about 18 months old.
• 45:23These movements continue and
• 45:25and and are accompanied by some
• 45:28additional modern movement.
• 45:32These kind of movements emerge very early,
• 45:34emerge in infancy, continue
• 45:37throughout childhood into adulthood.
• 45:39Tom Fernandez, who is going to
• 45:41speak after me is doing some very
• 45:43interesting work trying to understand
• 45:45how what the adult outcomes may
• 45:47look like in some of the children.
• 45:49This kind of movements may be
• 45:52mild or could be very severe,
• 45:54in some cases leading to self injury.
• 45:59It is not clear.
• 46:00Despite the fact that they
• 46:01are so behaviorally obvious.
• 46:03It is not clear what causes them
• 46:06and whether the mother stereotypies
• 46:08we see in children and autism and
• 46:11in children who are otherwise seem
• 46:12to be developing typically and
• 46:15really sharing the same mechanisms
• 46:17and and we don't know how to how
• 46:20to treat them and when to treat
• 46:23them and whether we really need
• 46:25to treat them in some cases.
• 46:27Importantly there are no clinics that
• 46:31specialize in in care of children
• 46:34with modern stereotypes to my best
• 46:37knowledge there there is one or
• 46:39the worst one which was which is
• 46:41about to close at at Johns Hopkins.
• 46:44So the families who are because children
• 46:47are affected by mother's stereotypies
• 46:49really have to rely on on on care,
• 46:52on rather fragmented care and often
• 46:57receive quite conflicted opinions
• 47:00about what it is and what whether
• 47:03the children should or should not be
• 47:05treated and if So what in what way.
• 47:09So I'm. I'm really happy to tell you that
• 47:15that we've partner with several our our
• 47:18colleagues here at the Child Study Center
• 47:21and at the Department of Paediatrics.
• 47:24What Tom and I are working very closely
• 47:27on this project and we have established
• 47:29a new line of research that's focused
• 47:32specifically on motor stereotypes and
• 47:35we're investigating investigating them
• 47:38in the context of other early onset
• 47:42complex neurodevelopmental disorders.
• 47:45We call our program CONDI or complex
• 47:48for new neurodevelopmental conditions
• 47:51program And we've been in operation
• 47:54from spring and and we've been,
• 47:58we've we have created a several
• 48:01course within this program.
• 48:02One of them involves clinical phenotyping
• 48:05or clinical assessment for these children.
• 48:08And if you're interested in hearing
• 48:10a little bit more about patient
• 48:12care within this context,
• 48:13I would strongly encourage you to
• 48:15take a look at one of the videos
• 48:18that was produced by my colleague Dr.
• 48:22Mariana Torres Miso.
• 48:25We also are trying to understand the
• 48:28underlying pathology and behind these
• 48:31behaviors using integrated approaches.
• 48:34We are developing research
• 48:37paradigms that involve imaging,
• 48:40genetics,
• 48:42eye tracking studies and also
• 48:45physiological studies which might
• 48:47help us map out the underlying
• 48:50processes and help us understand a
• 48:52little bit that better this very,
• 48:55very complex phenomena.
• 48:57We are also doing something
• 48:59that we call data mining,
• 49:02which means that we are basically and
• 49:06analyzing large databases which will
• 49:09help us understand these these complex
• 49:12phenomena from some different perspectives.
• 49:15Now you know these,
• 49:18these,
• 49:18this kind of work represents to
• 49:21some extent A paradigm shift in what
• 49:23we typically do in developmental
• 49:25psychopathology.
• 49:26Typically we focus on a single
• 49:28disorder and we study children
• 49:31with that particular disorder.
• 49:33In this case we are taking
• 49:35a transdiagnostic approach.
• 49:36We are actually interested in
• 49:38children with variety of diagnosis who
• 49:41experience a modern stereotypes and
• 49:43try to understand what's what what,
• 49:46what kind of underlying processes
• 49:50do these children share.
• 49:52You know,
• 49:52we we can be inspired by our patients.
• 49:57We can have tremendous expertise.
• 50:01But we wouldn't be able to do any
• 50:05of this exciting, innovative,
• 50:06high risk work without a tremendous
• 50:11support of of our associates.
• 50:13And I wanted to extend my deepest
• 50:17and more sincere thanks to
• 50:21to our supporters to the Virginia and
• 50:26Leonard Marks Foundation and and more
• 50:30specifically our our friends Jennifer and
• 50:33Bud Gruenberg for supporting this work.
• 50:36I also wanted to mention to you that
• 50:39this kind of this kind of programs,
• 50:42these these kind of research and
• 50:46clinical environments and rich research
• 50:48and clinical environments create a
• 50:50tremendous opportunities for fostering
• 50:53the next generation of of researchers.
• 50:57And I would just like to flag a couple of
• 51:01several presentations that you can take
• 51:04a look at in that are included in in our
• 51:09offline collection by two very talented
• 51:15trainees who are who just graduated
• 51:18from college and spent two years with
• 51:21us on getting ready for graduate career.
• 51:25We have Emily and and Kat and also
• 51:28I would like to highlight two young
• 51:32researchers Anjuna Vernetti and
• 51:34and Sarah Sanchez Alonso who are
• 51:37developing a new lines of research
• 51:40utilizing some of the exciting new
• 51:43technology involving live eye tracking
• 51:46and F news technology. No. Since
• 51:50we're also talking about
• 51:52mentors, I would like to just since
• 51:55many of you know Fred very well,
• 51:57I would like to acknowledge
• 52:00him and see if he just retired.
• 52:04And and thanks for all the knowledge
• 52:07and entertainment that we had together.
• 52:10And and Fred would say, you know,
• 52:13there's never a dull moment.
• 52:15So thank you very much for your
• 52:18attention and answer questions. We'll
• 52:20move over. We'll move to Tom now.
• 52:22Thank you so much. Tom,
• 52:27thank you. Just going to
• 52:28share my screen. Yes, please.
• 52:32OK. Hi, everyone.
• 52:33So I'm Tom Fernandez, associate
• 52:36professor in Child Study Center and Vice
• 52:38chair of research for the department.
• 52:40I am also a Co director.
• 52:42Oh, excuse me one second. Yep.
• 52:46Co Director of our Tourette's Syndrome
• 52:48and OCD program in the child Study Center.
• 52:52We have a great team.
• 52:53You'll see them on the screen here.
• 52:56Co Director, Michael Block,
• 52:57I just want to highlight and there are two
• 53:01mentors that who passed the baton to us,
• 53:03the former Co directors,
• 53:05Jim Blackman and Bob King.
• 53:07We really have a great team of
• 53:09clinicians and mentors in the in
• 53:11the program and we are a Tourette's
• 53:14Syndrome Center of Excellence
• 53:16acknowledged by the tourist Association.
• 53:18And you know in addition to
• 53:20the clinical work,
• 53:21I also do genetics research and have
• 53:26a neuropsychiatric genetics lab.
• 53:28And we do a lot of sequencing of DNA,
• 53:32of children that come through our
• 53:34clinic and others with the goal of
• 53:37trying to discover risk genes for
• 53:39these disorders and discovering the
• 53:41risk genes so that we can understand
• 53:44the biology and that with the hope
• 53:46that these will lead us toward
• 53:47new treatments and interventions.
• 53:51And I really love what I do.
• 53:53I mean, I think the only complaint
• 53:54that I would have is that there's
• 53:56just not enough hours in the day to
• 53:58do all the things that, you know,
• 54:00I think that we should be doing.
• 54:04And for me, there's really, you know,
• 54:06there's really nothing better than
• 54:07working on science that's going to teach
• 54:09us about these conditions with the goal
• 54:12of bringing them back to our patients.
• 54:13And this is what we call
• 54:15translational science.
• 54:16But here's what's so frustrating
• 54:17for me and I and I know for the
• 54:19families that we are trying to help
• 54:21and that is this statistic, 17 years,
• 54:24there's a 17 year gap between
• 54:27scientific discovery and getting them
• 54:29translated into clinical practice.
• 54:32And when I started out training,
• 54:34I was very skeptical of this number.
• 54:36This number has been floated
• 54:37around for a long time,
• 54:38but it just so happens that I'm about
• 54:4017 years out of graduating medical
• 54:43school and I can say that this,
• 54:46this absolutely is, if not precise,
• 54:48it's it's around there way
• 54:51too long and so one.
• 54:53So, So what do we do?
• 54:55I mean, this is really,
• 54:56in my mind,
• 54:57not acceptable.
• 54:58One thing is clear is we really need
• 55:01to have a deep bench of clinician
• 55:03scientists to do the innovative and
• 55:06translatable work that really needs
• 55:08to be done and make the difference.
• 55:10And one of my roles at Child
• 55:12Study Center is to advise Dr.
• 55:15Mason,
• 55:15the department on how we
• 55:17can grow new research,
• 55:19how we can do our part to grow the
• 55:21number of clinician scientists in
• 55:23pediatric and behavioral mental health.
• 55:25And I often think back to my journey
• 55:27and think about how I arrived at this
• 55:30great opportunity that I that I have now.
• 55:32And I think I'd like to share it
• 55:34with you very quickly because I think
• 55:36there's a few pivotal moments that
• 55:38taught me what I think we need to
• 55:41do in this field if we want to make
• 55:45some progress to closing this gap.
• 55:47And so soon after graduating college,
• 55:51I was trying to figure out
• 55:53what to do with my life,
• 55:54like most college graduates and
• 55:57applied for a fellowship at the NIH.
• 56:00And I was astounded that I was selected,
• 56:03not really knowing much
• 56:04about the health field.
• 56:06And I had the privilege of being mentored.
• 56:08And this was a kind of a random pair up
• 56:11with a remarkable clinician scientist,
• 56:13Doctor Judith Rapoport.
• 56:15And Dr.
• 56:16Rapoport was among the first to
• 56:18delve into complexities of early
• 56:21onset psychiatric disorders.
• 56:22And I remember on my arrival
• 56:24for my first day on the job,
• 56:26As for research assistant well
• 56:28#1 being extremely nervous.
• 56:30But on my desk she left me a copy of
• 56:33a book that she recently published
• 56:35called The Boy Who Couldn't Stop Washing.
• 56:38This went on to become a best seller
• 56:41and really was a Seminole worker
• 56:43responsible for bringing widespread
• 56:45attention to obsessive compulsive
• 56:47disorder at a time when it was not
• 56:50widely understood or discussed.
• 56:51And I remember reading it and
• 56:54even just recently rereading it
• 56:56and being drawn into these vivid
• 56:59personal accounts of individuals,
• 57:01children,
• 57:01families with OCD and realizing
• 57:03that talking to patients
• 57:05and families and understanding their
• 57:08perspective is really a prerequisite and
• 57:11essential in order to know what research to
• 57:14prioritize and how to approach treatments.
• 57:16I also remember being amazed by the
• 57:19observation that she writes in her book,
• 57:22and this is 30 plus years ago now,
• 57:25that 20% or more patients have a close
• 57:28relative with the same problems,
• 57:30and some argue that this could be because of
• 57:33children copying behaviors of their parents.
• 57:36But for obsessive compulsive disorder
• 57:38and this is a disorder in which so
• 57:40much of the symptoms are kept private,
• 57:42this was unlikely to explain it all.
• 57:44So I, you know, remember that being a focus
• 57:47of my discussions with Doctor Rappaport,
• 57:49I also told her that I was really
• 57:52interested in maybe studying this,
• 57:54you know, and we studied genetics of OCD.
• 57:57She walked me down the hallway and
• 57:59introduced me to her friend Francis,
• 58:00who happened to be Francis Collins,
• 58:02who is the head of the Human Genome
• 58:04Research Institute at the time, who said,
• 58:06why don't you come sit in on my course?
• 58:08I'm teaching a course to
• 58:10undergraduates at Georgetown.
• 58:12Be willing to, you know,
• 58:14be happy to have you.
• 58:15And I said great and and really
• 58:18was astounded by, you know,
• 58:20and at that time we hadn't even had
• 58:22had a draft of the human genome yet,
• 58:24but really astounded by the,
• 58:25the promise of potential to
• 58:27apply this in psychiatry.
• 58:28And so with the knowledge
• 58:30I gained in this course,
• 58:31it actually led to my first paper,
• 58:33you know, before medical school.
• 58:34And this was looking at,
• 58:36and this is, you know,
• 58:37nowadays, you know,
• 58:38really it would not be accepted
• 58:39as a paper because we have much
• 58:41higher standards for genetics.
• 58:44But looking at things in childhood,
• 58:46onsite schizophrenia,
• 58:47Looking at Maple lipoprotein ileals.
• 58:50So almost done.
• 58:52Bringing Fast forward to being
• 58:55admitted to medical school.
• 58:57Doctor Andreas Martin.
• 58:58I don't know if you remember
• 58:59or not Doctor Martin,
• 59:00but you know you all remember it.
• 59:02But I don't know if Doctor Martin
• 59:04remembers that he was the first to
• 59:06introduce me to my primary mentor,
• 59:09Doctor Matthews State,
• 59:10because I had shared my interest
• 59:13in psychiatry and genetics.
• 59:15Doctor State was really my foremost mentor,
• 59:17teaching me everything about genetics and
• 59:20the sharing his excitement for the field.
• 59:22He's also a collision scientist and Doctor
• 59:25State introduced me to Herb Allison,
• 59:29one of our associates.
• 59:31Unfortunately,
• 59:32he he passed away about 10 years ago,
• 59:34but he was very interested in advancing
• 59:38this field and provided very generous
• 59:41funding that allowed me to start up
• 59:44some of the first DNA sequencing
• 59:47studies in obsessive compulsive disorder,
• 59:49also in ADHD,
• 59:51anxiety and motor stereotomies.
• 59:54So now what?
• 59:54So it's been 17 actually 18 years
• 59:57since I've committed to becoming a
• 59:59physician scientist and psychiatry,
• 01:00:01believe it or not,
• 01:00:02we're we are almost there I think
• 01:00:04you know for using genetics.
• 01:00:06I think there are techniques now
• 01:00:09that we can be using and some
• 01:00:12tests that we can use in order to
• 01:00:14inform risk. And So what do we do?
• 01:00:18I said we need a deep bench of clinician
• 01:00:21scientists that can continue this progress,
• 01:00:23multidisciplinary scientists.
• 01:00:24And one of the things that we can do
• 01:00:28and we have been doing here at Child
• 01:00:30Study is to award early career funding.
• 01:00:32And these are to spark or ignite
• 01:00:34these new ideas that are innovative
• 01:00:36but have really great potential
• 01:00:38to lead to continued progress.
• 01:00:40And thanks to some of our families,
• 01:00:43really you made this possible,
• 01:00:46associated families,
• 01:00:46you made this possible for us to
• 01:00:49continue to give out awards for
• 01:00:51early career trainings in psychiatry.
• 01:00:53So I'm very hopeful for the future.
• 01:00:55I'm very excited about this work.
• 01:00:56And I really thank you all
• 01:00:57for making this possible.
• 01:00:59Thanks.
• 01:01:08Thank you, Tom. And turn to Doctor Gerber.
• 01:01:21Can everyone see my slides? Yes.
• 01:01:27OK. Hi, everyone.
• 01:01:29So my name is Alan Gerber.
• 01:01:31I'm a child psychologist.
• 01:01:33And I'm also a postdoctoral
• 01:01:35fellow in the Mcpartland lab
• 01:01:37at the Yale Child Study Center.
• 01:01:39Today I'm going to speak with you
• 01:01:41about my research on understanding
• 01:01:43loneliness and autistic youth.
• 01:01:45So I'll start with a story.
• 01:01:47When I was a grad student,
• 01:01:48it was during the beginning
• 01:01:50of the COVID-19 pandemic,
• 01:01:52and like many of us,
• 01:01:53I was feeling kind of lonely,
• 01:01:55a bit stuck in my apartment at the time.
• 01:01:59I reached out to friends and
• 01:02:01family sometimes people I hadn't
• 01:02:03spoken with in quite some time.
• 01:02:05Everyone was using Zoom
• 01:02:06and WhatsApp at the time,
• 01:02:08and and Zoom was quite new.
• 01:02:10And this experience really got me
• 01:02:12thinking about how was the pandemic
• 01:02:15impacting the autistic individuals
• 01:02:16and their families that I worked with.
• 01:02:22So it was around that time that as a whole,
• 01:02:24we were really starting to recognize
• 01:02:27loneliness as this major public health issue.
• 01:02:30But for many of the clients
• 01:02:31that I was working with,
• 01:02:32social isolation and loneliness
• 01:02:34were already a common concern.
• 01:02:37Now, despite this,
• 01:02:38the experience of loneliness and autistic
• 01:02:41youth remains pretty poorly understood.
• 01:02:44And so these experiences that I had
• 01:02:46both clinically and in the research
• 01:02:49world led to my dissertation project,
• 01:02:51which was focused on following
• 01:02:53autistic youth and their families
• 01:02:56throughout the pandemic.
• 01:02:57And I was able to do this at
• 01:02:59the time because of a generous
• 01:03:01seed grant from a donor.
• 01:03:03And
• 01:03:06one of the things that that really
• 01:03:08surprised me was I found a striking
• 01:03:11amount of variability in loneliness.
• 01:03:13So what do I mean by that?
• 01:03:15Well, many autistic youth were
• 01:03:17reporting high levels of loneliness,
• 01:03:19sort of as we expected.
• 01:03:21But also many weren't.
• 01:03:22In fact, many reported that they felt less
• 01:03:25lonely over the course of the pandemic.
• 01:03:28And so it's likely that for these youth,
• 01:03:31there were some beneficial
• 01:03:32aspects to the pandemic,
• 01:03:34including options for remote schooling
• 01:03:36and an increase in family time.
• 01:03:39And for me,
• 01:03:40this really sparked a career interest
• 01:03:42in understanding the experience
• 01:03:44of loneliness and autistic youth.
• 01:03:46The goal of my research is really
• 01:03:48to identify which of these youth
• 01:03:49are likely to feel lonely so we can
• 01:03:52develop preventative treatments.
• 01:03:56So right now I'm in the
• 01:03:57second year of a postdoctoral
• 01:03:58fellowship in the Mcpartland lab,
• 01:04:00and I recently received, as you saw
• 01:04:03with Doctor Fernandez's presentation,
• 01:04:05a donor funded pilot research award
• 01:04:08for Yale Child Study Center trainees
• 01:04:10to continue some of this work.
• 01:04:13And so we're now actually working
• 01:04:14on the study in the lab that uses a
• 01:04:17novel combination of methods to better
• 01:04:19understand the experience of loneliness.
• 01:04:21And my hope is that these results can
• 01:04:24be used to identify markers of risk
• 01:04:27for loneliness in autistic youth.
• 01:04:29So I'll tell you a little bit about
• 01:04:30the study, kind of a bird's eye view.
• 01:04:33The first aim is to capture the
• 01:04:35experience of loneliness and
• 01:04:37autistic adolescence as it unfolds.
• 01:04:39And so to do this,
• 01:04:40we ask teens to tell us about their
• 01:04:42feelings in the moment using real time
• 01:04:44reporting through their smartphone,
• 01:04:46Which as we know, if you have teens,
• 01:04:48they're always on.
• 01:04:49This novel approach allows us to get a
• 01:04:52more in depth and naturalistic picture
• 01:04:54of loneliness in their daily lives.
• 01:05:01So the second aim of the study is
• 01:05:03to examine whether some of these
• 01:05:05daily experiences of loneliness can
• 01:05:07be can be predicted using markers
• 01:05:09of brain functioning measured by
• 01:05:12electroencephalography or EEG.
• 01:05:14And here I've been really lucky
• 01:05:15to have Doctor Mcpartland as a as
• 01:05:17a mentor for this project who's
• 01:05:19a nationally recognized expert in
• 01:05:21autism biomarker research and who
• 01:05:23you'll hear from later this afternoon.
• 01:05:26Through the support from this
• 01:05:28donor funded pilot research award,
• 01:05:29I am able to receive specialized
• 01:05:31training in EEG data collection and analysis.
• 01:05:34It's really been very critical and
• 01:05:36vital for my own career development.
• 01:05:40Overall, I just want to thank funders
• 01:05:43who have had such a profound impact
• 01:05:45on my career trajectory by providing
• 01:05:48me with this funding for my research,
• 01:05:50but also the ability to gain
• 01:05:52really unique training experiences.
• 01:05:54So in the future,
• 01:05:55I'm planning on building on this
• 01:05:57work by applying for an NIMH career
• 01:05:59development award and that will
• 01:06:01ultimately help me transition into
• 01:06:03an independent research career.
• 01:06:05I'm also really looking forward
• 01:06:07to giving back to trainees in
• 01:06:09the same way that I was afforded
• 01:06:12some of these opportunities.
• 01:06:14So I just want to thank everyone
• 01:06:16for listening and appreciate the
• 01:06:18support and acknowledge the support
• 01:06:21from funders as well as my lab.
• 01:06:23And I'm going to turn it over for questions.
• 01:06:26Thank you very much.
• 01:06:27Thanks so much. So we're
• 01:06:30open now for questions.
• 01:06:35Any questions from the audience?
• 01:06:40One question submitted was do we know
• 01:06:43why children engage in stereotypic
• 01:06:46movements and what function do they serve?
• 01:06:50Does anybody want to take that one?
• 01:06:56Well, I, I, I can take this on.
• 01:06:57And it's it's an important
• 01:06:59question because this is
• 01:07:04it, will it. It tells us a little bit
• 01:07:07about why children continue doing it.
• 01:07:09So there's certain situations where
• 01:07:11children are more likely to engage
• 01:07:14in modern studies, and they involve
• 01:07:18sometimes children are excited,
• 01:07:20sometimes children are a little
• 01:07:23uncertain about what what's what's
• 01:07:25happening and a little stressed,
• 01:07:27and sometimes they're bored.
• 01:07:30Based on these observations,
• 01:07:33researchers have proposed that
• 01:07:36perhaps stereotypes have some
• 01:07:39regulatory functions and they can
• 01:07:42help children either increase or
• 01:07:45decrease physiological arousal,
• 01:07:47bringing them to more optimal states.
• 01:07:51What's interesting is this is pretty
• 01:07:54pretty straightforward hypothesis and and
• 01:07:57it has been advanced maybe 20-30 years ago.
• 01:08:02However,
• 01:08:02there are almost no studies
• 01:08:06that evaluated this empirically.
• 01:08:09There may be couple of studies that
• 01:08:11that were conducted on on one or two
• 01:08:14children in conclusive results and
• 01:08:15and but the question is tremendously
• 01:08:17important because if these therapies
• 01:08:18have a functional significance for
• 01:08:21for for our children we need to
• 01:08:23understand what it what it is because
• 01:08:25when we intervene or when we decrease
• 01:08:28their frequency we might actually
• 01:08:30take away very effective ways for
• 01:08:32them to to to regulate their arousal.
• 01:08:34So good question and I wish
• 01:08:36we had a better answer.
• 01:08:37This is one of the reasons where
• 01:08:40where why part of our experimental
• 01:08:42paradigms include measurements of
• 01:08:45physiological arousal to to to
• 01:08:47actually understand whether this is
• 01:08:50these contingencies are really true.
• 01:08:52Tasha,
• 01:08:54Tom, do you have any thoughts?
• 01:08:59Yeah, I think I think
• 01:09:00we'd be glad to talk about
• 01:09:01it in a breakout room.
• 01:09:02I think that is a really interesting
• 01:09:05question and it serves a purpose
• 01:09:07but not one that you know the
• 01:09:09kids can always tell us about
• 01:09:11and they can they can interfere.
• 01:09:12So that's the reason why we need
• 01:09:14to pay attention and they can,
• 01:09:16I think we're learning Kaja,
• 01:09:18with some of your work that they
• 01:09:20can predict a longer term outcomes
• 01:09:22and so we can use them as a maybe a
• 01:09:24predictor and then a way to to keep
• 01:09:26more track on some of these kids.
• 01:09:31Alan, it's You're engaging
• 01:09:33in such a important issue,
• 01:09:35especially given the Surgeon
• 01:09:37Generals calling it out.
• 01:09:39Do you have a sense,
• 01:09:42do you have a sense more broadly
• 01:09:45of why there's such an epidemic
• 01:09:47of loneliness in the country?
• 01:09:53This is a really interesting question
• 01:09:56and I do also want to speak to it why
• 01:09:58people are are have I think there's
• 01:10:00been a lot of loneliness and now we're
• 01:10:03really starting to see it with a pandemic
• 01:10:06where people are really starting to
• 01:10:07call it out and pay attention to it.
• 01:10:08But it's it's been there for quite
• 01:10:11some time and loneliness has
• 01:10:13really negative consequences.
• 01:10:15So it's associated with poor mental health,
• 01:10:19poor physical health,
• 01:10:21increase in suicidality.
• 01:10:22So a number of these things are,
• 01:10:24if we can reach it at an early time point,
• 01:10:27we can really make a difference.
• 01:10:29I think in terms of an increase,
• 01:10:32the pandemic really brought it out,
• 01:10:34but I I actually think it's been there
• 01:10:37for quite some time and only now we're
• 01:10:39starting to see this as a major issue.
• 01:10:42So hopefully that will draw
• 01:10:43attention to keep it there though,
• 01:10:46It's like so many things, isn't it?
• 01:10:48The pandemic didn't 'cause it,
• 01:10:49but shone a light on it.
• 01:10:54Other questions from from the audience,
• 01:11:02I'm just scanning for hands up
• 01:11:04or speak out or in the chat.
• 01:11:14Well, thanks so much to our panelists.
• 01:11:16We have built in a a break right now.
• 01:11:19So please, Krista will put up a
• 01:11:22screen that gives you a chance
• 01:11:25to scan in where the posters
• 01:11:27and the recorded talks are,
• 01:11:30as Kasha was mentioning.
• 01:11:32So here we have a question from Jason.
• 01:11:34So Alan, it's for you.
• 01:11:37Are there specific aspects of the
• 01:11:39COVID Online experience that you expect
• 01:11:42will become tools going forward?
• 01:11:45Yeah, this is a great question and
• 01:11:47I I won't be offended if anyone
• 01:11:49would like to take a break now,
• 01:11:51but it this is something we're
• 01:11:53thinking about quite a bit.
• 01:11:54Remote schooling in particular is a
• 01:11:57really important piece of this experience
• 01:11:59and there's a great paper on how it
• 01:12:01impacts kids with social anxiety as well.
• 01:12:04The ability to have some more control
• 01:12:07over your environment and the sort
• 01:12:09of unwritten curriculum are real
• 01:12:11challenges for neuro diverse students.
• 01:12:13And the pandemic has really gotten
• 01:12:15us to think a little bit about
• 01:12:18how we can be flexible with some
• 01:12:21of those things and you know,
• 01:12:23use those tools going forward.
• 01:12:25The other thing we think a lot about is
• 01:12:27digital social communication, right?
• 01:12:29If any of you have teens,
• 01:12:32you know that your kids most,
• 01:12:34perhaps most of their interactions
• 01:12:35is coming online, is coming through,
• 01:12:37you know, in an online setting.
• 01:12:40And so how do we make sure to keep those
• 01:12:44environments safe, but also helpful?
• 01:12:46Because for many autistic individuals,
• 01:12:48and I, I don't want to speak for them,
• 01:12:49but from what I've heard in
• 01:12:51my interactions with clients,
• 01:12:52it's actually quite beneficial
• 01:12:55and more comfortable.
• 01:12:57And at the same time,
• 01:12:58it can be harder because it can be
• 01:13:00harder to read body language through
• 01:13:02a text conversation, for example.
• 01:13:03And for people who are having
• 01:13:06challenges with that,
• 01:13:07that can add to your challenges.
• 01:13:08So it's really an interesting balance.
• 01:13:10I think if we offer the tools
• 01:13:17in a balanced way, in a flexible way,
• 01:13:20giving people choices for what works
• 01:13:21best for them, I think that's the
• 01:13:23way moving forward. But I think
• 01:13:25it's a great opportunity for research.
• 01:13:29You're muted, Linda. I'm
• 01:13:33sorry, Tom, You have your hand up.
• 01:13:37Fred Volkmar to me was sort of Mr.
• 01:13:39Autism, not just to me,
• 01:13:41it's the old Charles Sonny,
• 01:13:42but to the world.
• 01:13:45And she also was a neighbor.
• 01:13:46And Martha's Vineyard,
• 01:13:48terrific human being.
• 01:13:50Is he going to have any contact
• 01:13:52going forward that you're aware
• 01:13:54of with the Child Study Center?
• 01:13:56Oh, yes, no. Fred is very much a member
• 01:13:58of our emeritus faculty and very much so.
• 01:14:01Tom, we don't, we don't let people retire.
• 01:14:04Actually, we they just may move to
• 01:14:07a different title, but they stay.
• 01:14:09So no, thanks for asking about that.
• 01:14:13And Carl, thank you for putting
• 01:14:16the publication link in the chat.
• 01:14:18Appreciate that.
• 01:14:20So we'll move to break and you can
• 01:14:23stay online because we're coming
• 01:14:25back to the very same place.
• 01:14:26Keep your cameras on or off.
• 01:14:29Krista will put up links where
• 01:14:30you can go see the posters in the
• 01:14:33presentations or at least find
• 01:14:34the web page and look forward to
• 01:14:39seeing you back at 3:30.
• 01:14:41Thanks so much.
• 01:15:09everyone. So I hope you had a good break.
• 01:15:14I'm very glad for us to come to our
• 01:15:17third panel and on our third panel we'll
• 01:15:20have an opportunity to hear again from
• 01:15:22a number of our clinical colleagues.
• 01:15:24And let me let me just tell you
• 01:15:28about introduce the third panel.
• 01:15:30Starting us off will be Amy Myers
• 01:15:32who is the Assistant Clinical
• 01:15:35Professor and a Senior Consultant to
• 01:15:38our family based recovery program.
• 01:15:41Victoria Staub,
• 01:15:42I'm Assistant Clinical Professor
• 01:15:44and Co Director of the ICAPS
• 01:15:47Model Development and Operations,
• 01:15:49Doctor Maggie Stokel,
• 01:15:50an Assistant Professor and
• 01:15:52Associate Director of our Pediatric
• 01:15:54Psychology program and Director
• 01:15:56of the GI Psychology Service.
• 01:15:58And then Dr.
• 01:15:59Tara Thompson Felix who is a Clinical
• 01:16:01child Psychiatry Fellow and doing her
• 01:16:04research with Doctor Karen O'Donnell.
• 01:16:07So, Amy,
• 01:16:07may I turn it to you?
• 01:16:10Yes, Thank you for the introduction
• 01:16:12and the opportunity to speak today.
• 01:16:16I myself was supported by a
• 01:16:18helper when I was a child.
• 01:16:20She was steady and calm and to me
• 01:16:23possessed some kind of magic that could
• 01:16:26translate my feelings and experiences
• 01:16:29into words understood by adults.
• 01:16:31So this helped me to grow up knowing
• 01:16:34that I would become a helper too.
• 01:16:37I'm the 1st in my family to go to
• 01:16:40college and one of few in my entire
• 01:16:43extended family across generations
• 01:16:45to turn to obtain a Master's degree.
• 01:16:48I stopped correcting my 83 year
• 01:16:50old mother when she tells me
• 01:16:53and tells other people when she
• 01:16:55introduces me that I'm a doctor.
• 01:16:57The last time I corrected her, she said,
• 01:16:59well, you're a doctor in my mind,
• 01:17:01so really forcing me to
• 01:17:03embrace her pride in me.
• 01:17:06I'm really fortunate to have introduced
• 01:17:09a new possibility to my family's
• 01:17:12intergenerational experience in that way.
• 01:17:15So not as a doctor,
• 01:17:16but as a clinical social worker,
• 01:17:19I've been faculty at the Child Study
• 01:17:21Center in the Family Based Recovery
• 01:17:23Model for more than 14 years.
• 01:17:26In Family Based Recovery, or FBR.
• 01:17:29We treat families who experience
• 01:17:31challenges across generations,
• 01:17:33including trauma,
• 01:17:35parental addiction and family separation.
• 01:17:39Our hope is to inter interrupt some
• 01:17:42of these intergenerational experiences
• 01:17:44and to introduce new possibilities
• 01:17:47for recovery and to keep families
• 01:17:49together rather than to separate them.
• 01:17:52And understanding that substance use
• 01:17:54is often part of the constellation
• 01:17:56of concerns when young children
• 01:17:58are separated from their families.
• 01:18:00FBR combines substance use treatment
• 01:18:03with home visiting and dyadic
• 01:18:07parent child therapy.
• 01:18:09Attending to the relationship
• 01:18:11between the parent and the child
• 01:18:13with simultaneous treatment to
• 01:18:15the parent is the main Ave.
• 01:18:18For this intergenerational impact
• 01:18:20that we hope to have.
• 01:18:22FBR provides long term and intensive
• 01:18:25treatment which in this world of of
• 01:18:29adult substance use treatment can
• 01:18:31feel like a luxury to be able to
• 01:18:34work with families for up to a year.
• 01:18:37This is work that I truly love and I'm
• 01:18:39often seeking ways to to learn more
• 01:18:41and to expand what I know in the field.
• 01:18:45And so I applied for and received a
• 01:18:47Faculty Development Fund to support
• 01:18:50me in obtaining a professional
• 01:18:52endorsement from the Connecticut
• 01:18:54Association of Infant Mental Health.
• 01:18:56This is an internationally recognized
• 01:18:59credential that communicates specialization
• 01:19:01and family work for families during
• 01:19:04infancy and early childhood.
• 01:19:06And as John Dolby said,
• 01:19:08if a community values its children,
• 01:19:11it must truly chop cherish its parents.
• 01:19:16What better way to initiate new family
• 01:19:18cycles and to focus on babies and infancy?
• 01:19:22The babies, the newest members of the family,
• 01:19:24and some might say the most
• 01:19:26infused with hope.
• 01:19:28In FBR,
• 01:19:28we witnessed that infants and young
• 01:19:30children are the powerful motivators
• 01:19:32for recovery for their parents,
• 01:19:34as well as motivators for parents
• 01:19:37who often hope to create a different
• 01:19:39experience for their children
• 01:19:41than the one that they had.
• 01:19:43The professional endorsement that
• 01:19:45the Faculty Fund supported me to
• 01:19:47obtain an infant mental health has
• 01:19:50allowed me to deepen my practice of
• 01:19:52centering the baby or centering the
• 01:19:54child in the family and the family work
• 01:19:56to maximize the possibility of this
• 01:19:58intergenerational recovery and healing.
• 01:20:01The Infant Mental Health Endorsement
• 01:20:03has also supported my learning of
• 01:20:05reflective practice and understanding
• 01:20:07the impact that this work has on
• 01:20:09all of us as the providers aiding
• 01:20:11in my goal to provide reflective
• 01:20:14consultation to other professionals
• 01:20:15in this work and understanding that
• 01:20:18when parents are identified as
• 01:20:20having substance use disorders and.
• 01:20:22When there is sometimes substance
• 01:20:24use during pregnancy or in
• 01:20:27utero exposure to substances,
• 01:20:29there is often a weight and a
• 01:20:32tremendous heaviness to the families
• 01:20:34in these to these families,
• 01:20:36and often also to the providers
• 01:20:38who are journeying alongside them.
• 01:20:42We hope that in our
• 01:20:42treatment and FBR, we are counteracting
• 01:20:44that stigma with treatment deeply
• 01:20:46rooted and safe and accepting treatment
• 01:20:49relationships very much supported by
• 01:20:51the infant mental health approach.
• 01:20:55Additionally, as a black woman and
• 01:20:57descendant of capable people without formal
• 01:20:59or institutional knowledge and education,
• 01:21:02it's been important for me to validate
• 01:21:04that there are many ways of knowing.
• 01:21:06In addition to traditional
• 01:21:09medical or educational models,
• 01:21:11Faculty Development Fund has also
• 01:21:14given me access dedicated learning,
• 01:21:16holistic models of healing trauma
• 01:21:19from experts in the field of what
• 01:21:22is called indigoggy or Indigenous
• 01:21:24ways of knowing and being.
• 01:21:25This learning is truly opening my
• 01:21:28understanding of the strength and
• 01:21:30teachings that come from generations
• 01:21:31before the present and from teachers
• 01:21:34who may not have always been valued due
• 01:21:36to their lack of formalized education,
• 01:21:39much like the early teachers in my life
• 01:21:41and much like the early teachers and the
• 01:21:42lives of the families that we work with.
• 01:21:47As we can see, continued professional
• 01:21:48learning comes from multiple pathways and
• 01:21:51that we learn from the time spent from
• 01:21:53being with and listening to families,
• 01:21:55from our colleagues in the mutual
• 01:21:58relationships between research and practice,
• 01:22:00and also formerly as students in classrooms,
• 01:22:04which can be costly to access.
• 01:22:07The cost can be a disincentive for many
• 01:22:10pursuing the the learning or furthering
• 01:22:12education and philanthropy can and has and
• 01:22:15does play a crucial role in this access.
• 01:22:17And for me coming in the amount of funds
• 01:22:20of sometimes just a few $100 to be able
• 01:22:24to access that continued learning and
• 01:22:27philanthropy for continued community,
• 01:22:29for continued learning communicates and
• 01:22:31investing in faculty in this way is a
• 01:22:34valued action at the Child Study Center,
• 01:22:36which I truly appreciate.
• 01:22:39I look forward to hearing the stories from
• 01:22:41the rest of my colleagues in this panel.
• 01:22:42And we'll now pass this on to Victoria Staub.
• 01:22:47Thank you for your time.
• 01:22:49Thank you, Amy.
• 01:22:53So my name is Victoria Staub and I'm a
• 01:22:57licensed clinical social worker and I'm
• 01:22:59one of the directors of the ICAPS Network.
• 01:23:03And for those of you who don't know,
• 01:23:05ICAPS is a intensive home based model for
• 01:23:09really children and adolescents who are in
• 01:23:13crisis and often their families are as well.
• 01:23:16Often times what we're dealing with are
• 01:23:19the long term impacts of complex trauma.
• 01:23:21Most of the kids in our program have
• 01:23:25multiple diagnosis and most of them
• 01:23:29are endorsing at least one history
• 01:23:31of a traumatic experience.
• 01:23:35And so when I was trying to kind of
• 01:23:38come up with a through line to to
• 01:23:40like tell you how I came to be here,
• 01:23:45really the first thought I had was
• 01:23:47for as long as I can remember I've
• 01:23:51experienced myself and my gender as non
• 01:23:54binary as third gender or androgynous.
• 01:23:57And I think that this experience really
• 01:24:03drew me to outsiders.
• 01:24:05And so flash forward to
• 01:24:07my undergraduate years.
• 01:24:09I spent a lot of time working
• 01:24:11in harm reduction and working
• 01:24:13with injection drug users and people who
• 01:24:18really, it turns out we're in
• 01:24:21an incredible amount of pain.
• 01:24:22And this was the pattern over and over again.
• 01:24:26Many different life backgrounds,
• 01:24:28but lots of pain and lots of pain
• 01:24:30in their childhood and in their
• 01:24:32relationships with their families.
• 01:24:35And so again kind
• 01:24:37of flash forward to my
• 01:24:39master's program. I'm finishing
• 01:24:41and I don't know what I want to do,
• 01:24:42but I find a fellowship at the
• 01:24:44Yale Child Study Center offered
• 01:24:47with an intensive home
• 01:24:48based program that really
• 01:24:51is meeting people literally where
• 01:24:53they are at in their homes,
• 01:24:56in their communities,
• 01:24:57meeting their family members.
• 01:24:59And so I stayed on after my fellowship
• 01:25:04obviously and spent the next decade
• 01:25:07really being mentored by Gene Adnapose,
• 01:25:11Joe Woolston, Arietta Slade.
• 01:25:14And out of this,
• 01:25:16out of these mentorships,
• 01:25:17developed a clinical tool and
• 01:25:21developed a clinical measure and
• 01:25:25have really worked to improve the
• 01:25:28program based on the data that we've
• 01:25:30been able to collect over the years.
• 01:25:33And so this is a database
• 01:25:34of about 20,000
• 01:25:35kids at this point,
• 01:25:38about 2000 kids
• 01:25:39a year are seen by ICAPS. So
• 01:25:44last year when we found out that
• 01:25:46the state was not really going to
• 01:25:48be able to continue to fund our
• 01:25:50database that's very, very old.
• 01:25:53It was only through a generous donation that
• 01:25:58we were able to
• 01:25:59kind of develop a new database and
• 01:26:04continue to collect this data that I
• 01:26:05just think is so important on this
• 01:26:08population that I think would not otherwise
• 01:26:12be able to be be so represented, right.
• 01:26:18So yeah, that's really how
• 01:26:20you know in, in my clinical
• 01:26:22career I'd I think is very
• 01:26:23impacted by this as well because
• 01:26:26all of our publications are
• 01:26:27days based in this database and
• 01:26:31we hope to continue to be
• 01:26:33able to improve
• 01:26:34the program. You know,
• 01:26:36without quality assurance and
• 01:26:37quality improvement, we wouldn't
• 01:26:38be able to know if we're doing
• 01:26:40what we say we're trying to do
• 01:26:47and if we're actually
• 01:26:48making improvements.
• 01:26:49So thank you very much for
• 01:26:52your time and I will send this
• 01:26:54over to Maggie, my colleague.
• 01:26:58Thank you Victoria.
• 01:26:59And Amy, it's really an honor
• 01:27:01to be here with everyone and
• 01:27:02just hear everyone's stories.
• 01:27:05So I'm a pediatric psychologist.
• 01:27:06I specialize in working with
• 01:27:08with youth who have a variety
• 01:27:10of chronic health conditions.
• 01:27:11But I I have a specialty in in GI
• 01:27:14so identify it as a GI psychologist
• 01:27:16and that's the kind of clinical
• 01:27:18work that I do here at Yale and
• 01:27:21in in thinking through where to
• 01:27:23start my story for the sake of
• 01:27:26time I'll start during senior year
• 01:27:28about senior year of college a
• 01:27:30month before graduation as a 22
• 01:27:32year old just having that moment
• 01:27:34of of paralysis and not really
• 01:27:36sure what I was going to do next.
• 01:27:39I had been on a pretty traditional
• 01:27:41academic path in in college and worked
• 01:27:44in a developmental psychology lab,
• 01:27:45so had all these plans to
• 01:27:48continue on that that linear path.
• 01:27:50After after I graduated and
• 01:27:53just starting in in May,
• 01:27:56I I had had this pull to clinical
• 01:27:58work even though I hadn't had
• 01:28:00much you know traditional exposure
• 01:28:02to it just felt myself wondering
• 01:28:04if I should explore whether that
• 01:28:05was the path for me.
• 01:28:06So after graduation I decided to
• 01:28:09veer paths from my original plans
• 01:28:12and paused on their their research
• 01:28:15and took took a job as a teacher
• 01:28:17down in North Carolina as a a
• 01:28:19teacher in a school for for kids
• 01:28:21with mental health conditions and
• 01:28:22learning challenges that made it
• 01:28:24really challenging for them to
• 01:28:26participate in really in mainstream
• 01:28:27society and in mainstream schooling.
• 01:28:31And that sort of the the thread
• 01:28:32through my career has been that I
• 01:28:34really enjoy working with kids teens
• 01:28:36and young adults who who don't fit
• 01:28:38into the boxes that we create in
• 01:28:40healthcare or in school systems.
• 01:28:42And that that teaching experience
• 01:28:44it was it's the hardest job I've
• 01:28:45I've had in my life.
• 01:28:46I learned so much in the time that
• 01:28:48I was there and it really it made
• 01:28:50me feel a true investment in that
• 01:28:51kind of population.
• 01:28:52So I I quickly knew that I,
• 01:28:54I,
• 01:28:55I wanted to continue this path as
• 01:28:57a clinical psychologist and then
• 01:28:59over time specialized further
• 01:29:01into pediatric psychology.
• 01:29:03And part of being a pediatric
• 01:29:04psychologist that I really love is
• 01:29:06working as part of an interdisciplinary team.
• 01:29:08So working with people in all
• 01:29:09different specialties so that
• 01:29:11we can help these kids who don't
• 01:29:13necessarily fit in these boxes that
• 01:29:16we create in our healthcare system.
• 01:29:18So I I trained for my residency
• 01:29:20on the West Coast in Oregon,
• 01:29:21and when it came time to
• 01:29:23considering a fellowship,
• 01:29:24I was really fascinated by
• 01:29:26the gut brain connection.
• 01:29:27And the the field of GI psychology was
• 01:29:30a relatively new field in Pediatrics
• 01:29:32at the time and there were very few
• 01:29:35formalized training programs for it.
• 01:29:38And I happened to be at the
• 01:29:39right place at the right time.
• 01:29:40And that the hospital that I
• 01:29:43was completing my residency for
• 01:29:46received a really generous donation
• 01:29:48from a donor who was really invested
• 01:29:51in addressing the mental health
• 01:29:52needs of of kids with GI conditions.
• 01:29:54Because GI conditions tend to be
• 01:29:56these invisible problems that kids
• 01:29:58have that are embarrassing to talk
• 01:29:59about and and keep them out of school
• 01:30:01and in in their day-to-day life.
• 01:30:03So because of the the generosity of
• 01:30:05that donor, I was able to have this
• 01:30:08really specialized training experience
• 01:30:10which which led me on the the career
• 01:30:12that I I've pursued until now.
• 01:30:14So I I stayed on the West Coast for
• 01:30:17a while and then came to Gale almost
• 01:30:20three years ago and had the privilege of
• 01:30:22partnering with my GI colleagues here.
• 01:30:25And because of the the, you know,
• 01:30:28support of our child Study Center
• 01:30:30faculty and and the associates,
• 01:30:32we have been able to really build some
• 01:30:35exciting programming that we're we're really,
• 01:30:38we're really proud of to help these
• 01:30:40kids in in our GI section who may
• 01:30:43not have very clear places to go.
• 01:30:45So that the specific clinical innovations
• 01:30:47I wanted to share today are two
• 01:30:49interdisciplinary clinics that we've
• 01:30:51started recently that are targeted to
• 01:30:52treat kids who have what are called
• 01:30:54disorders of gut brain interaction.
• 01:30:56So these are conditions that the
• 01:30:58traditional medical testing is normal.
• 01:31:00You know that these these conditions are
• 01:31:03impairing kids who have abdominal pain,
• 01:31:05nausea,
• 01:31:05all of the GI symptoms that can
• 01:31:07make it really hard to function.
• 01:31:09And they've been told by many previous
• 01:31:11providers that we don't know what's wrong.
• 01:31:12We're not sure what this is.
• 01:31:14We don't know where to send you.
• 01:31:16So we've developed some interdisciplinary
• 01:31:18programs to to treat this very population.
• 01:31:20The 1st is called our GIR Fib program.
• 01:31:23It's meant to treat kids who have these
• 01:31:25kinds of gut brain access problems,
• 01:31:27who through those those GI issues
• 01:31:30develop significant feeding challenges.
• 01:31:32So we we help get them on their feet and
• 01:31:35and get them back to their life in many ways.
• 01:31:38So that that clinic is staffed
• 01:31:41by GI attending AGI psychologist
• 01:31:42and AGI dietitian and we treat,
• 01:31:44we treat the patients together in
• 01:31:47the room together and then hopefully
• 01:31:48kind of get them back to to eating
• 01:31:51adaptively and get back to life.
• 01:31:53The second clinic is that I wanted to
• 01:31:55highlight is called our pelvic pain program.
• 01:31:58And this is an interdisciplinary
• 01:32:00program across 3 disciplines actually
• 01:32:03with GI psychology,
• 01:32:04our GI attending and adolescent
• 01:32:06gynecology because we we noticed
• 01:32:07that we were sharing a lot of the
• 01:32:09same patients and they they all
• 01:32:11didn't seem to have a very clear
• 01:32:13home in the medical system.
• 01:32:14So we're this is the first of its kind
• 01:32:17in the nation in terms of this kind of
• 01:32:20collaboration with with these disciplines.
• 01:32:22Our hope is that through the
• 01:32:24clinical work we can not only
• 01:32:25help the patients that we treat,
• 01:32:27but but also develop a new
• 01:32:30classification diagnostically for
• 01:32:31for kids who have these types of
• 01:32:33conditions. It's a hope that we will be able
• 01:32:38to help more outside of the walls of Yale.
• 01:32:41So more to come in the breakout rooms.
• 01:32:42I'm happy to chat more about that,
• 01:32:44but I just wanted to express my
• 01:32:46gratitude to all the associates
• 01:32:48for your support and gratitude
• 01:32:49to all of my colleagues here.
• 01:32:50I feel really lucky to have all of you.
• 01:32:53So I'll turn it on to over to to Tara,
• 01:32:56our clinical fellow in
• 01:32:57the Child Study Center.
• 01:33:00Thank you so
• 01:33:00much, Maggie. So good afternoon, everyone.
• 01:33:03My name is Tara Thompson Felix and I'm
• 01:33:06a child and adolescent psychiatrist
• 01:33:07here in the Child Study Center and also
• 01:33:10a third year PhD student at the Yale
• 01:33:12Graduate School working with Kieran
• 01:33:14O'Donnell here at the Child Study Center.
• 01:33:16So I took a a very non traditional route
• 01:33:19to combine my clinical and research
• 01:33:21interests in perinatal psychiatry.
• 01:33:23But in retrospect I feel like things
• 01:33:26happen just the way they were supposed to.
• 01:33:28So I'm also a first year or first
• 01:33:31generation college student and
• 01:33:33the first doctor in my family.
• 01:33:35My parents came to the US in the
• 01:33:38early 80s from Jamaica seeking a lot
• 01:33:41of opportunities for our family,
• 01:33:42like many other families.
• 01:33:44And very early on,
• 01:33:46I learned the importance of networking
• 01:33:48and finding financial opportunities to
• 01:33:51create the future I wanted for myself.
• 01:33:53And so I also have a college story,
• 01:33:55you know, during my senior year.
• 01:33:57So while I was in college, you know,
• 01:33:59I worked in the MDPHD department
• 01:34:01at Rutgers in New Jersey,
• 01:34:03and I learned about all of the
• 01:34:05ways that we can integrate clinical
• 01:34:07care and the research.
• 01:34:08I also learned about the the gap between,
• 01:34:11you know,
• 01:34:12the translational research
• 01:34:13that we're all interested in.
• 01:34:15And I just found that very exciting and
• 01:34:17wanted to explore more opportunities.
• 01:34:20So when I came back home in Connecticut,
• 01:34:22I reached out to a world renowned scientist
• 01:34:25here in the Child Study Center, Dr.
• 01:34:27Elena Gregoranco,
• 01:34:28and I volunteered throughout the
• 01:34:30summer to learn more about genetics,
• 01:34:33epigenetics and how that relates
• 01:34:36to child psychiatric disorders.
• 01:34:38And during my senior year,
• 01:34:40I was awarded a small travel grant
• 01:34:42to travel from New Jersey back to
• 01:34:45Connecticut to complete my research
• 01:34:47project with Doctor Gregor Enko.
• 01:34:49And this grant helped me to
• 01:34:51develop my project.
• 01:34:52It also helped me to develop important
• 01:34:54research skills and to meet more
• 01:34:57mentors here at the Child Study Center.
• 01:34:59And importantly,
• 01:35:00it also helped me to secure additional
• 01:35:03funds to stay at the Child Study
• 01:35:05Center for an additional two
• 01:35:07years after I graduated college.
• 01:35:09And so this was a pivotal experience
• 01:35:11for me because it encouraged me
• 01:35:13to think outside of the box and
• 01:35:15to use the resources I have,
• 01:35:17no matter how small they might seem.
• 01:35:20So after my research experience
• 01:35:21at the Child Study Center,
• 01:35:23I went to medical school and
• 01:35:26completed adult residency training,
• 01:35:28and I developed a strong clinical and
• 01:35:30research interest in perinatal psychiatry,
• 01:35:33more specifically wanting to improve
• 01:35:34maternal health so that we can
• 01:35:36improve child health outcomes.
• 01:35:38And my passion for this topic took
• 01:35:41a whole new meaning when I became
• 01:35:44a mother myself during residency
• 01:35:46with two little ones.
• 01:35:47And I wanted to pursue my fellowship
• 01:35:50in a program where I knew I would
• 01:35:52feel supported not only as a
• 01:35:55scientist or a physician,
• 01:35:56but also as a mother and to have a community.
• 01:35:59And so coming back to the
• 01:36:01old Child Study Center
• 01:36:02was a very easy choice for me.
• 01:36:04But at that point, you know,
• 01:36:06I I knew I wanted to continue my research,
• 01:36:09but I wasn't sure how I would be
• 01:36:11able to do it after fellowship,
• 01:36:12you know, as I also had to think
• 01:36:15about paying my medical school debt
• 01:36:17and also having child care costs.
• 01:36:19And so during my child fellowship, you know,
• 01:36:22I was very grateful to receive a pilot
• 01:36:25award supported by our generous donors.
• 01:36:27And with this award,
• 01:36:28I was able to delve a little deeper
• 01:36:30into the research I wanted to do.
• 01:36:32So I was able to do some clinical work,
• 01:36:34you know, with moms and their infants,
• 01:36:36but I was also able to do some
• 01:36:40translational work and look at
• 01:36:41more basic science side of things,
• 01:36:43answering the similar question,
• 01:36:45you know, how do in utero
• 01:36:48exposures impact the fetal brain?
• 01:36:51And with the pilot award,
• 01:36:53I was able to investigate
• 01:36:55a new way of signaling,
• 01:36:56which are tiny little cellular packages
• 01:36:58called extracellular vesicles.
• 01:37:00And we learned that the fetal brain secrets,
• 01:37:03these vesicles,
• 01:37:05and they're really important in
• 01:37:07US understanding the communication
• 01:37:09between a mom and their baby.
• 01:37:12And so with the data I generated
• 01:37:14from this award,
• 01:37:15I was also able to attract more funding
• 01:37:18from the NIH to pay back a substantial
• 01:37:21amount of my medical school loans,
• 01:37:24which was a big stressor for me,
• 01:37:26but a huge relief for me and my family.
• 01:37:29So I was able to get additional
• 01:37:32funding and continue to
• 01:37:34pursue my PhD and think about,
• 01:37:36you know,
• 01:37:36in the future other ways that we
• 01:37:38can do translational work here
• 01:37:40at the Child Study Center.
• 01:37:41So in sharing my story,
• 01:37:43I wanted to highlight how these
• 01:37:45donations might seem small,
• 01:37:47but they can have a huge impact
• 01:37:49for early career investigators
• 01:37:51like myself and my colleagues.
• 01:37:53So I want to thank you for your time
• 01:37:55and for having me on the panel today.
• 01:37:56Well,
• 01:37:58thank you so much.
• 01:38:01We're open now for questions.
• 01:38:04Any questions for everyone in the audience
• 01:38:24hands up
• 01:38:28this will be AI Hope it's a continuation.
• 01:38:32Actually the question that Tom Israel
• 01:38:35asked early with the number of children
• 01:38:38needing mental health services and
• 01:38:42there's fewer of us than than of them.
• 01:38:46Can you think of ways, continued ways
• 01:38:49that we can better engage and better
• 01:38:56ensure that we're getting
• 01:38:57those services out there?
• 01:39:01Anybody want to start
• 01:39:03Amy, I I can just say that
• 01:39:05I know that something that
• 01:39:06Family Based Recovery does along with
• 01:39:09other models of the child Study Center
• 01:39:11and including Icaps is thinking about
• 01:39:14ways to to bring services to the family.
• 01:39:17That there can be many barriers to families,
• 01:39:21families accessing services in the community.
• 01:39:23And I think in particular where
• 01:39:25there's substance use involved,
• 01:39:27the stigma that's often attached to that
• 01:39:30can be a barrier to parents accessing
• 01:39:33treatment treatment or or going to community
• 01:39:37providers for accessing treatment.
• 01:39:39And so thinking about home based work
• 01:39:43and ways to to support that often
• 01:39:45funding for home based work because
• 01:39:47some of the services may or may not
• 01:39:49be available can be challenging.
• 01:39:51And so I think ways to expand if possible
• 01:39:54bringing some of those two families is,
• 01:39:56is one of the things that I feel
• 01:39:58like it's really important.
• 01:40:03Yeah, I'll just second that because
• 01:40:05I think one of the things about.
• 01:40:09Home based programs is that
• 01:40:11we have to deal with a lot of
• 01:40:14politics and it it's really nice
• 01:40:20when there there's you can
• 01:40:21kind of make improvements and
• 01:40:23you can you know you you don't
• 01:40:25have to deal with so many layers.
• 01:40:28I think that's really one of the the
• 01:40:30benefits of, yeah, generous. Tony,
• 01:40:36any questions from the audience?
• 01:40:41Maggie, can you see the
• 01:40:44question GI psychology asking
• 01:40:48for a little more about that.
• 01:40:53Do you see it in the chat?
• 01:40:54Sorry, Yeah, I'm just reading the question.
• 01:40:59So do the children with the
• 01:41:02enteric neurobiological conditions
• 01:41:03have concurrent mucosal?
• 01:41:04So my quick answer to that is yes.
• 01:41:06I think our our general approach
• 01:41:08to the treatment of disorders
• 01:41:10of gut brain interaction is,
• 01:41:12is that we we really make it clear
• 01:41:16to families that it's not an either
• 01:41:18or it's not either the gut in the
• 01:41:20entire nervous system or the brain.
• 01:41:22You know a lot of the families that
• 01:41:24come to us have received messages like
• 01:41:26these aren't these symptoms aren't real.
• 01:41:28These, these,
• 01:41:29these symptoms are all in in
• 01:41:30your brain or related to some of
• 01:41:32the things in the questions this
• 01:41:33they they might think this is all
• 01:41:35related to the food we're eating.
• 01:41:36This is all related to the gut microbiome.
• 01:41:39And what what we really focus on in
• 01:41:42every visit with the families we work
• 01:41:44in is that it's it's not an either or
• 01:41:46all of these disorders of gut brain
• 01:41:47interaction are are multifactorial.
• 01:41:48You know similar to a lot of
• 01:41:51the complex mental health
• 01:41:52conditions that that we all treat.
• 01:41:54I think it probably relates a
• 01:41:56lot to what with the work that
• 01:41:57you do in ICAPS Victoria.
• 01:41:59So I think that's that's our
• 01:42:00first really mission in in our
• 01:42:02our interdisciplinary clinics is
• 01:42:04is helping families to understand
• 01:42:06that it's not just one factor that
• 01:42:08leads to all these conditions.
• 01:42:10So in terms of how
• 01:42:13things are interpreted and processed by kids,
• 01:42:15I think we sometimes surprise kids and
• 01:42:18and parents with our descriptions of what
• 01:42:20disorders of gut brain interaction are.
• 01:42:22Because I think sometimes they have
• 01:42:24been so stigmatized with previous
• 01:42:26providers that they come in thinking
• 01:42:28that when they're seeing the GI
• 01:42:30psychologist that I'm going to give them
• 01:42:32traditional mental health treatment and
• 01:42:33and if if we treat your depression,
• 01:42:36if we treat your anxiety that the GI,
• 01:42:38the GI problems will go away.
• 01:42:39And it's not actually not just
• 01:42:41about that which is kind of shocking
• 01:42:42for families to to hear.
• 01:42:44The my role is actually to use cognitive
• 01:42:47behavioral therapy tools to treat the
• 01:42:49GI symptoms directly so we can use GI
• 01:42:52informed cognitive behavioral therapy
• 01:42:54to turn the volume down on the GI tract.
• 01:42:57So we we, it's never just one conversation.
• 01:43:01We, you know,
• 01:43:02we make sure that we have that kind
• 01:43:03of conversation every,
• 01:43:04every clinic visit.
• 01:43:05So I hope that answered your questions.
• 01:43:09Maggie, there's a question above Michael
• 01:43:11Raven wanting to know a little bit more
• 01:43:14about what this field we see it above.
• 01:43:17Yes. OK,
• 01:43:23yes, it is a
• 01:43:25a a new, a new field. I often get
• 01:43:28that question of I've never heard
• 01:43:29those two words used together.
• 01:43:33It's unique in in the ways that I
• 01:43:36just described is that I I don't
• 01:43:39treat traditional mental health
• 01:43:40conditions like I treat GI conditions.
• 01:43:42Of course we treat depression and
• 01:43:44anxiety and and trauma along the way,
• 01:43:46but my job is to actually treat
• 01:43:48the GI symptoms themselves.
• 01:43:50And I think the special challenges that
• 01:43:53come with this kind of work are that
• 01:43:55we we are immediately hit with stigma.
• 01:43:58And unfortunately because it's a newer field,
• 01:44:02really well-intentioned providers
• 01:44:04that may see these families before
• 01:44:06may unintentionally send the wrong
• 01:44:08kind of messaging to to families about
• 01:44:11what the what the conditions are.
• 01:44:13So we sometimes have to do a lot
• 01:44:15of relationship building and kind
• 01:44:17of undoing of some of the messages
• 01:44:20that that that have been received.
• 01:44:23But I I see those challenges as
• 01:44:24the exciting part of the work.
• 01:44:26I think it was what really fascinated
• 01:44:28me by it when I was finishing my
• 01:44:30residency because the the field is
• 01:44:32constantly changing in really cool ways.
• 01:44:34We're learning more about the the
• 01:44:36gut microbiome and we're learning
• 01:44:38more about the kinds of therapies
• 01:44:39that we can do to treat these kids.
• 01:44:41So I feel really lucky to be a part of this,
• 01:44:44this small and growing community and
• 01:44:47I feel really grateful to be able to
• 01:44:49be appreciated for that here at Yale
• 01:44:51because it is such a unique specialty.
• 01:44:56Any other questions from the audience?
• 01:45:01Yes,
• 01:45:03it's a little
• 01:45:04off topic, but when I heard ICAPS,
• 01:45:06it reminded me of your close working
• 01:45:09relationship in the past anyway with
• 01:45:11the New Haven Police Department and I
• 01:45:14didn't know where that was currently.
• 01:45:18I think that's
• 01:45:20Kerry's program, correct? Do you want to
• 01:45:23take that one?
• 01:45:25And I'm so sorry. Could you repeat
• 01:45:27the question? I heard the police,
• 01:45:29the state of the relationship with
• 01:45:31the New Haven Police Department,
• 01:45:33working relationship.
• 01:45:35No, I'm speaking for my team.
• 01:45:37I'm not sure if any of them are on.
• 01:45:39I know Kristen Hamm was
• 01:45:41on at a certain point.
• 01:45:42Yes, we have an ongoing,
• 01:45:43I think it's almost a 40 year
• 01:45:45relationship with the New Haven
• 01:45:47Police Department where we
• 01:45:49collaboratively cross train
• 01:45:51each other and really work on
• 01:45:54improving trauma informed policing,
• 01:45:56going out together on ride alongs
• 01:45:59and responding and and going to
• 01:46:01the homes and engaging families
• 01:46:03where children have been impacted
• 01:46:05by recent traumatic events.
• 01:46:07And that is one thing that our
• 01:46:09program is doing that has been just
• 01:46:10so key in terms of community engagement.
• 01:46:12I would say
• 01:46:14it's over 20 years ago,
• 01:46:16but my daughter was on a Harris
• 01:46:19Fellowship and was on a ride
• 01:46:21along with somewhat late at night
• 01:46:24and she called my wife and said,
• 01:46:26I don't know if I should tell you this,
• 01:46:27but I forgot my bulletproof
• 01:46:30vest and my wife said you
• 01:46:31shouldn't be telling me this.
• 01:46:35Unfortunately, she is OK
• 01:46:38yes. And it was that wonderful
• 01:46:42clip of a police officer whose
• 01:46:45life was saved because of his
• 01:46:47relationship with the community.
• 01:46:49And here's his big,
• 01:46:51tough old detective pulling his eyes
• 01:46:54out because of the relationship that
• 01:46:56had been established between the
• 01:46:59Child Study Center in New Haven.
• 01:47:00Please. Yeah.
• 01:47:03Thank you, Tom is
• 01:47:05the shout out to my team,
• 01:47:06who does that amazing work.
• 01:47:09Thank you, Karen.
• 01:47:10So thanks to our panelists.
• 01:47:12And we'll move to our final panel.
• 01:47:14We move back to our research colleagues.
• 01:47:19So our first speaker will
• 01:47:20be Doctor Flora Vacarino,
• 01:47:21who is the Harris Professor and Director
• 01:47:24of the Program for Neurodevelopment
• 01:47:26and Regeneration as well as Laboratory
• 01:47:29of Development on Neurobiology.
• 01:47:31Dr. Jamie Mcpartland will be next.
• 01:47:33Also Harris Professor and Director of
• 01:47:36the Yale Developmental Disabilities
• 01:47:38Clinic and the Yale Center Co Director in
• 01:47:40the Yale Center for Brain and Mind Health.
• 01:47:43Doctor Ellie Leibowitz,
• 01:47:44an Associate Professor and Co Director
• 01:47:46of the Anxiety and Mood Disorders
• 01:47:49Program and Doctor Emily Olson,
• 01:47:51an assistant professor in the Center.
• 01:47:53So, Flora, may I turn to you first?
• 01:47:57Good afternoon.
• 01:47:59It's truly an honor to be speaking with
• 01:48:03you as I've done sometimes in the past.
• 01:48:07So I'd like to start with a personal story.
• 01:48:10I'm a physician trained in neurology
• 01:48:13in Italy and in psychiatry here,
• 01:48:16actually here at Yale that early on
• 01:48:20entered the field of neurobiology
• 01:48:23or developmental biology because
• 01:48:26I really wanted to help patients.
• 01:48:29And I was aware how little we knew
• 01:48:33about brain, how brain develops,
• 01:48:35how brain functions,
• 01:48:36how the different portion of this incredible
• 01:48:39machine get put together very early on.
• 01:48:44And indeed,
• 01:48:44I did learn that this happens sometimes very,
• 01:48:47very early.
• 01:48:48Some of the fundamental decision that
• 01:48:50govern how many cells we have and
• 01:48:54what kind of neurons would grow and
• 01:48:56how do we respond to things like the
• 01:48:58environment and all the challenges
• 01:49:00and injuries that we have in life.
• 01:49:03So, So I I was eager to answer these
• 01:49:09questions and when I started working,
• 01:49:11I was a young faculty member in the 90s.
• 01:49:15At that time, you know,
• 01:49:18it has been very difficult to
• 01:49:19study the human brain.
• 01:49:21So what I was doing,
• 01:49:22I was mostly dealing with mice and
• 01:49:25I was doing a lot of genetics,
• 01:49:27doing working on the genetics
• 01:49:29of mammalian development,
• 01:49:31using mouse as a model.
• 01:49:33And that's been great,
• 01:49:35but it was deeply unsatisfactory
• 01:49:38because of course we all know
• 01:49:40how different is the brain of a
• 01:49:43human from the brain of a mouse.
• 01:49:45As a matter of fact,
• 01:49:46from the brain brain of almost
• 01:49:48any other animal,
• 01:49:48except perhaps some primates
• 01:49:50that are more similar to us.
• 01:49:51We have so many more cells.
• 01:49:53It's so much more complex.
• 01:49:54It's incredible.
• 01:49:55And and there's been no model so
• 01:49:59far to really study this except
• 01:50:03about let me share my screen.
• 01:50:08In 2007,
• 01:50:11about 15 years into my working
• 01:50:15mouse development,
• 01:50:18somebody called Shinya Yamanaka
• 01:50:20in Japan discovered something
• 01:50:23incredible that you can take a human
• 01:50:25cell and it can be any cell and
• 01:50:28develop that into a pluripotent cell
• 01:50:30which is a cell that can give rise
• 01:50:32to almost any cells in the body.
• 01:50:34And so you can take these cells
• 01:50:36and they're basically in vitro.
• 01:50:38They become immortal and then
• 01:50:40you can take them back and sorry
• 01:50:43and develop them into something
• 01:50:46that's similar to a mini brain.
• 01:50:48So you can did give them
• 01:50:51instructions that tells them,
• 01:50:53OK, now you become a brain.
• 01:50:54We call this brain organoids.
• 01:50:56But basically they recapitulates what
• 01:51:00normal cells do during development to
• 01:51:03generate from a pretty potent cell,
• 01:51:06a neuron,
• 01:51:07a particular kind of neurons
• 01:51:09of a specific brain region.
• 01:51:12So this was kind of incredible because
• 01:51:15this says when they can be brought
• 01:51:18back to recapitulate brain development,
• 01:51:21they do so in a personal way.
• 01:51:24They maintain the personal genetic
• 01:51:26background of that person.
• 01:51:27And so that immediately I understood
• 01:51:30that that gave us the occasion to
• 01:51:33really study brain development in a
• 01:51:35particular person retrospectively.
• 01:51:39So I was very eager to enter this field,
• 01:51:41but I had all these mice and and I
• 01:51:46really didn't know how to embrace it.
• 01:51:49And so at that time there was a
• 01:51:51family of donors, the Aronstein
• 01:51:53family who really, really helped us,
• 01:51:56me in particular to recruit somebody new,
• 01:52:00change my, my lab gradually into
• 01:52:04developing this type of research.
• 01:52:08So over the years,
• 01:52:09we in collaboration with many
• 01:52:11clinician at the Child Studies Center,
• 01:52:14the some of whom you already
• 01:52:15heard of Doctor Chavaska Dr.
• 01:52:17Mcpartland who will speak after me,
• 01:52:20We recruited patients and we developed
• 01:52:23these lines and now we're at the point
• 01:52:27that 10 years later we have about
• 01:52:291000 lines from over 150 individual
• 01:52:32from many developmental disorders
• 01:52:35particularly autism into that syndrome.
• 01:52:38And So what we do and so this was thinking
• 01:52:44really a particular set of donors,
• 01:52:47this family that really helped us
• 01:52:49in a in a time where pretty much we
• 01:52:53didn't have any other resource and just
• 01:52:56give you an example of what we do.
• 01:53:00So right now we recruit patients.
• 01:53:03We have these lines.
• 01:53:05And then here is a study where
• 01:53:07we compared families of patients
• 01:53:09with autism and we compared the
• 01:53:11program with autism with the father.
• 01:53:13In this model of invitro brain development,
• 01:53:16we just published this paper.
• 01:53:18We demonstrated that children with autism,
• 01:53:21when they are modeled this way,
• 01:53:25actually develop a slight imbalance
• 01:53:27between excitatory and inhibitory neurons.
• 01:53:30But this imbalance remarkably is
• 01:53:32different in every individual.
• 01:53:33So we're not all the same.
• 01:53:35Patients are not all the same.
• 01:53:38People that are so-called have typical
• 01:53:40trajectory are not all the same.
• 01:53:42We do this,
• 01:53:43the brain develops in slightly
• 01:53:45different way in each individual.
• 01:53:46This is a remarkably powerful notion
• 01:53:49that we're learning using this modeling.
• 01:53:53And this is just an example.
• 01:53:54We do a lot of genomics.
• 01:53:56We analyze every single cells.
• 01:53:59This is a typical organoid,
• 01:54:01each dot is a cell.
• 01:54:02We characterize them in different
• 01:54:04type of neurons or real cells and
• 01:54:07we and we reach sets and conclusion.
• 01:54:10We can also look at their electrical
• 01:54:12activity.
• 01:54:13You see here these neurons are
• 01:54:15firing in a dish and we can study
• 01:54:18the rate of their firing,
• 01:54:20how fast they fire, do they fire less,
• 01:54:22do they fire more?
• 01:54:24So where are we going with this?
• 01:54:27So the the basic notion I want to
• 01:54:30impress in you is that studying the
• 01:54:33individual and this is gives that the
• 01:54:36possibility of studying the individual,
• 01:54:38the actual biology of that individual,
• 01:54:40the actual biology of brain
• 01:54:42development of that individual.
• 01:54:43Such a powerful notion.
• 01:54:46And they're telling US1 size doesn't fit all.
• 01:54:49We're all different.
• 01:54:50And maybe there are some extreme trajectories
• 01:54:53that are more different than others.
• 01:54:55And then they lead to some disease.
• 01:54:57But we're all different.
• 01:54:59Where are we going with this?
• 01:55:01We want to study autism in female.
• 01:55:04We've shown that.
• 01:55:04I've shown that in males we
• 01:55:06have these imbalances between
• 01:55:07excitatory and inhibitory neurons.
• 01:55:09This could be implication.
• 01:55:10They could have implication for treatments.
• 01:55:13We need to remind ourselves that these
• 01:55:15things potentially could be corrected,
• 01:55:17but we need to be aware of how
• 01:55:20different people are and the
• 01:55:22treatments may need to be personalized.
• 01:55:24And we can then develop this model
• 01:55:27further in view of treatment
• 01:55:30and we can look at large scale
• 01:55:32studies potentially in the future
• 01:55:33to look at this phenotype across
• 01:55:35a large number of individuals.
• 01:55:38And so I wanted to finish by
• 01:55:42acknowledging my lab, my collaborator,
• 01:55:45the clinicians who have helped in our
• 01:55:48studies to recruit all these people,
• 01:55:50our Funding Agency and especially
• 01:55:52the Aranstein family who gave
• 01:55:54us the chance to be here to get
• 01:55:57to this point and to continue
• 01:56:00this incredible trajectory.
• 01:56:01Thank you.
• 01:56:06Thank you for. May we turn to Jamie.
• 01:56:10Sure. Thanks so much, Linda.
• 01:56:12And and Laura, thanks for queuing me up.
• 01:56:15I'm going to expand on the idea that Laura
• 01:56:18put forward that one size doesn't fit all
• 01:56:21her or we can talk about it as heterogeneity.
• 01:56:24And as many of you know,
• 01:56:25I my focus primarily is autism.
• 01:56:28And really the idea that one size doesn't fit
• 01:56:30all is actually what brought me to autism.
• 01:56:33One summer during college I was I was very,
• 01:56:37very certain that I was going to be a lawyer.
• 01:56:40And I spent a summer working as an assistant
• 01:56:43teacher at a school on Long Island for
• 01:56:45children with development disabilities.
• 01:56:47And this was my first contact
• 01:56:49with autistic children.
• 01:56:50And I came to the classroom that first day,
• 01:56:52and I met Tessa, and I met Bradley,
• 01:56:55and Bradley came up to me and talked
• 01:56:57to me and read to me from his favorite
• 01:56:59book and told me probably more than I
• 01:57:01actually wanted to know about that book.
• 01:57:04And Tessa said nothing to me.
• 01:57:07She didn't look at me.
• 01:57:08She sat in the corner by herself,
• 01:57:10and she played with the fringe on the carpet.
• 01:57:13And I didn't understand what
• 01:57:16they They both had autism.
• 01:57:18They were both in the same classroom.
• 01:57:21What did this mean?
• 01:57:22What did it mean about the brain
• 01:57:26that that the same kinds of kids who
• 01:57:28have such different strengths could
• 01:57:30have some common vulnerabilities?
• 01:57:32And what does it mean about psychology and
• 01:57:35psychiatry that we don't have better labels,
• 01:57:37that we call these really,
• 01:57:38really different kids autism?
• 01:57:40And I changed gears and that's what I did,
• 01:57:43is try to figure out what's happening here
• 01:57:46and how we can individuate the differences,
• 01:57:49the strengths,
• 01:57:50the weaknesses of these kids
• 01:57:52in meaningful ways.
• 01:57:53I,
• 01:57:53again,
• 01:57:54clinically as a graduate student
• 01:57:56trying to understand the diagnostic
• 01:57:59classifications that we use.
• 01:58:01And maybe if I really,
• 01:58:02really dug in there,
• 01:58:04the answer would be there and it wasn't.
• 01:58:08And I thought, well,
• 01:58:10maybe if I dig into the brain,
• 01:58:13maybe the things that I can't
• 01:58:15see with my own eyes,
• 01:58:16the things that are hidden
• 01:58:17inside the cranium,
• 01:58:18are the things that are going to
• 01:58:20help me understand what are the
• 01:58:21meaningful differences and how to help.
• 01:58:23And what I can't tell you
• 01:58:25whether they're there or not,
• 01:58:26but I can tell you that for the
• 01:58:28past 20 years, I continue to look.
• 01:58:30And that's what I've done since
• 01:58:32I came to Yale, now 20 years ago,
• 01:58:35almost 2004.
• 01:58:36And you know, on this day,
• 01:58:39talking to the associates,
• 01:58:40I feel like my career is a bit of a
• 01:58:43case study in how you can be impactful.
• 01:58:46When I came here,
• 01:58:46my job was to be in a clinic and to
• 01:58:49be working with kids with autism
• 01:58:51and get from the associates gave
• 01:58:53me some time to study and to write
• 01:58:55grants and to try to start a lab.
• 01:58:57And then when I had a lab support
• 01:59:00from the associates,
• 01:59:01let me do things like
• 01:59:03send print a poster
• 01:59:04so that I could be a part of an
• 01:59:07academic conference or or take a lab
• 01:59:09a colleague out for coffee so that
• 01:59:11we could talk about a new project.
• 01:59:13As my lab grew and as my the
• 01:59:16trajectory of my career changed,
• 01:59:19the associates have made have
• 01:59:21remained just as important.
• 01:59:23In 2015, I received the the biggest grant
• 01:59:27the NIH has ever given to study autism.
• 01:59:31But as bizarre as it sounds,
• 01:59:32this gigantic grant didn't include money
• 01:59:36for an EEG system to actually do the work.
• 01:59:39The associates came through
• 01:59:41and let this study happen.
• 01:59:43When I had the idea that maybe some of
• 01:59:45the things that we've learned in this
• 01:59:48study could be termed not just as kind
• 01:59:50of descriptors of how to understand
• 01:59:52autism but as treatment targets,
• 01:59:55it was an associate who helped
• 01:59:57me buy a machine so that I can
• 02:00:00now directly stimulate parts of
• 02:00:02the brain to ramp up the parts.
• 02:00:04That we think are under active.
• 02:00:06So really it's been critical at every
• 02:00:08stage and now I find myself at a part
• 02:00:11of the career where I've come full
• 02:00:12circle a little bit and now I have
• 02:00:15the opportunity to help some of the
• 02:00:17people that are that are in my lab.
• 02:00:19You heard from Allen.
• 02:00:20Others that are other postdocs
• 02:00:21or junior colleagues have ideas
• 02:00:23that need to be launched.
• 02:00:25And one of the the truths about
• 02:00:28science is that we can't launch our
• 02:00:31boldest ideas with conventional
• 02:00:33funding mechanisms that are too risky.
• 02:00:35And most funding mechanisms are risk averse.
• 02:00:38So what people what supporters like
• 02:00:40you all do is let us support those
• 02:00:42kinds of ideas to launch today.
• 02:00:44The kinds of things that we're
• 02:00:46trying to launch a Bolt.
• 02:00:47We're trying to understand how
• 02:00:49social media and the idea that
• 02:00:51someone thumbs up or thumbs down,
• 02:00:53every single thing you do,
• 02:00:55how that affects autistic people
• 02:00:58with social disabilities.
• 02:00:59We're trying to figure out ways.
• 02:01:00You know,
• 02:01:01we we've learned so much about how
• 02:01:03the autistic brain responds to social
• 02:01:05information, but most of what we do in a lab,
• 02:01:08if we have new kinds of equipment,
• 02:01:10could we actually do it when people
• 02:01:11are engaging with one another in real life?
• 02:01:13We think so.
• 02:01:14That's what we're trying to do.
• 02:01:15So thank you.
• 02:01:17It's been a partnership.
• 02:01:19Many of you associates are people
• 02:01:21that I consider friends,
• 02:01:23colleagues.
• 02:01:23I was thinking some of you are
• 02:01:26even co-authors,
• 02:01:27some of you have been mentors to me
• 02:01:29and I thank you for your partnership.
• 02:01:31And really today I'm still trying
• 02:01:34to do a better job than we did,
• 02:01:38you know more than 20 years ago
• 02:01:39for Tessa and Bradley.
• 02:01:40So thanks for your partnership in that.
• 02:01:42I'm going
• 02:01:45to turn to Ellie.
• 02:01:49Hi, I'm Ellie Liebowitz.
• 02:01:51I'm in the Anxiety program. And about
• 02:01:5615 years ago, I was living in Israel
• 02:02:00actually, and working primarily as a
• 02:02:04clinician in my own practice and in
• 02:02:07Israel's largest Children's Hospital.
• 02:02:10But I knew that I wanted my clinical work to
• 02:02:15inform a career in research on child anxiety,
• 02:02:20and my boss at the hospital gave
• 02:02:22me a contact the lead at the Child
• 02:02:24Study Center and suggested, hey,
• 02:02:26maybe reach out, share your interest,
• 02:02:28see if there's an opportunity there.
• 02:02:31So I sent an e-mail and about 5 minutes
• 02:02:35later I woke up my wife to say hey.
• 02:02:39They replied to my e-mail and the e-mail
• 02:02:43back said there might be something.
• 02:02:47And that led to a very rapid whirlwind.
• 02:02:50A couple of weeks and within
• 02:02:53a month our family,
• 02:02:54including two little boys at
• 02:02:56the time and two dogs,
• 02:02:58had moved to New Haven to start
• 02:03:02working as the quote anxiety postdoc.
• 02:03:06Now that was only possible because
• 02:03:10of a person's generosity and
• 02:03:14commitment to building a world
• 02:03:17leading anxiety program because they
• 02:03:20cared enough about mental health,
• 02:03:22about children's development,
• 02:03:24and we're willing to take concrete
• 02:03:27action and steps to make a difference.
• 02:03:30And now we have a thriving anxiety
• 02:03:34program that has already made a
• 02:03:36very real impact on the field,
• 02:03:39including developing to the
• 02:03:41fastest growing new treatment
• 02:03:43for child anxiety in 30 years.
• 02:03:48When people ask me about
• 02:03:50my personal trajectory,
• 02:03:52I tend to emphasize being
• 02:03:55fortunate in three ways.
• 02:03:583 forms of generosity that I
• 02:04:01have been able to benefit from.
• 02:04:05Generosity of philanthropy.
• 02:04:07Generosity of mentorship and
• 02:04:10generosity of collaboration.
• 02:04:13And I try to pay these things
• 02:04:15back as much as I can today,
• 02:04:17because I know very well that without
• 02:04:19all three of those forms of generosity,
• 02:04:23I would never be able to accomplish anything.
• 02:04:27You know, when I sent that e-mail years ago,
• 02:04:30I had a lot of ideas about things that I
• 02:04:33thought needed to change in our field.
• 02:04:36My clinical work was showing me that
• 02:04:39the one size approach to treating
• 02:04:42anxiety just didn't make sense.
• 02:04:44For example,
• 02:04:45I would often have to turn away
• 02:04:49families who were seeking treatment
• 02:04:51because their anxious child wasn't
• 02:04:53motivated or was unwilling or
• 02:04:55unable to collaborate with the very
• 02:04:57demanding challenges that are part
• 02:04:59of cognitive behavioral therapy,
• 02:05:01which has been for a long time the
• 02:05:04frontline treatment for anxiety.
• 02:05:05But my frustration about not being able
• 02:05:08to help those families kept growing.
• 02:05:10You know, parents would say to me,
• 02:05:12of course, they're too anxious for
• 02:05:14what you're asking them to do.
• 02:05:17They're anxious.
• 02:05:18That's the whole point.
• 02:05:19They have anxiety.
• 02:05:20That's why we came.
• 02:05:21And I knew from my work with
• 02:05:24other problems like aggression,
• 02:05:26defiance,
• 02:05:27disruptive behaviors.
• 02:05:28I knew from those fields that
• 02:05:31parent work can be just as
• 02:05:34sometimes even more effective
• 02:05:35than treating a child directly.
• 02:05:38And I also saw how deeply
• 02:05:40parents were getting entangled
• 02:05:42in their children's anxiety
• 02:05:44symptoms through the process of
• 02:05:47accommodating the child's anxiety.
• 02:05:52And when I went to do a review of
• 02:05:54the literature of the research on
• 02:05:57accommodation of child anxiety,
• 02:05:58which I learned about through
• 02:06:00the field of research in OCD,
• 02:06:02and I was seeing in my clinical work,
• 02:06:03I went to do like,
• 02:06:05what does the literature say about this?
• 02:06:07Well, that literature review
• 02:06:08proved to be very,
• 02:06:10very short because there were
• 02:06:12exactly 0 studies of that.
• 02:06:15And so I had a lot of ideas for new research,
• 02:06:19directions for different
• 02:06:21biological mechanisms,
• 02:06:22for new treatment to help more families.
• 02:06:26But ideas are actually not the
• 02:06:30scarcest resource in our field.
• 02:06:33There are a lot of good ideas out there,
• 02:06:37but none of them really mean anything without
• 02:06:40the opportunity to actually implement them.
• 02:06:44For me,
• 02:06:45it would not have come to anything
• 02:06:47without the opportunity to be here
• 02:06:49benefiting from the generosity of donors,
• 02:06:52of mentors,
• 02:06:53of collaborators working with
• 02:06:55collaborators like Flora and the
• 02:06:58really mind boggling science that she
• 02:07:01just described a few minutes ago.
• 02:07:03Collaborations with Flora LED us to
• 02:07:06identify novel biomarkers that have
• 02:07:09never been studied before in human beings,
• 02:07:12and that may help to unravel some mysteries
• 02:07:14that have been around for a really long time.
• 02:07:18Like how does stress and adversity in
• 02:07:22childhood lead to anxiety disorders later?
• 02:07:27What are the actual molecular
• 02:07:29pathways linking those things,
• 02:07:30and can we intervene to change them?
• 02:07:33Or working with brilliant
• 02:07:36geneticists like Tom Fernandez,
• 02:07:38like Emily Olson,
• 02:07:42has led to groundbreaking genetic
• 02:07:45discoveries that can take us one step
• 02:07:48closer to being able to say more than just.
• 02:07:53Yes, genetic plays a role,
• 02:07:56but we don't really understand how,
• 02:07:59which has kind of been my answer to a lot
• 02:08:02of the genetics questions for way too long.
• 02:08:05And working with mentors
• 02:08:07like Wendy Silverman,
• 02:08:09who directs the Anxiety Program,
• 02:08:10like Jim Lackman, like Bob King.
• 02:08:12Like so many others.
• 02:08:15The mentors who believed in me supported
• 02:08:17me and have been a role model to me.
• 02:08:22Without all of those things,
• 02:08:23it would not be possible.
• 02:08:26Now, I guess, in a sense,
• 02:08:28I guess my message is that if you
• 02:08:31can be generous in any of these ways,
• 02:08:34do it not just for our center,
• 02:08:37our department,
• 02:08:38but for every sphere in your life.
• 02:08:40Maybe there is somebody that you
• 02:08:42can mentor. Maybe there
• 02:08:45is a new collaboration that you
• 02:08:47can form that can prove to be more
• 02:08:49than just the sum of its parts,
• 02:08:51as so many collaborations really do,
• 02:08:54And maybe you can support financially the
• 02:08:57outcomes that you want to see in the world.
• 02:09:00We have a lot more things to do.
• 02:09:03I have more ideas, more directions,
• 02:09:07more potential discoveries in mind today
• 02:09:10than I did back when I sent that e-mail.
• 02:09:13And with enough support,
• 02:09:15with enough mentorship,
• 02:09:16with enough collaboration,
• 02:09:18I hope that some of these ideas
• 02:09:21will become reality as well.
• 02:09:23So thank you.
• 02:09:26Well, and, Emily, may I turn to you.
• 02:09:32Thank you. And these are hard
• 02:09:36acts to follow for sure.
• 02:09:38So my name is Emily Olson,
• 02:09:40and I'm a child psychiatrist
• 02:09:42and a genetics researcher,
• 02:09:43and I started on faculty here at the Yale
• 02:09:45Child Study Center just over a year ago.
• 02:09:48And before that I did my clinical
• 02:09:50and research training here as well.
• 02:09:52So I don't have quite as long
• 02:09:53a career to draw upon as my
• 02:09:56other colleagues in this panel.
• 02:09:58But even in this time,
• 02:10:00I do feel that donations have
• 02:10:02really made a big difference,
• 02:10:04not only in my career,
• 02:10:05but also, importantly,
• 02:10:07in the science that I've been able to pursue.
• 02:10:11And just as an example,
• 02:10:12the first grant that I ever
• 02:10:14received at the Child Study
• 02:10:15Center was about six years ago,
• 02:10:17when I was fortunate to receive
• 02:10:19one of those Child Study Center
• 02:10:21pilot grants that we've heard
• 02:10:23kind of come up a few times,
• 02:10:25which were only made possible
• 02:10:26by donations to the center.
• 02:10:28And this pilot grant allowed me
• 02:10:30to start a new research study
• 02:10:33focused on trichotillomanium.
• 02:10:35Now,
• 02:10:36trichotillomania is a condition
• 02:10:37you might not always hear about,
• 02:10:39but it's relatively common,
• 02:10:41affecting about 1% of the population,
• 02:10:44usually onsets around puberty,
• 02:10:46and it's characterized by
• 02:10:48pulling out of one's own hair.
• 02:10:52And it causes kind of significant
• 02:10:54distress because it causes bald
• 02:10:56spots and so impairment in
• 02:10:58school and at home and sometimes
• 02:11:01medical complications as well.
• 02:11:03And these kids who have trichotillomania
• 02:11:06are also have high rates later on of
• 02:11:10developing anxiety and depression.
• 02:11:12So I became interested in this condition
• 02:11:14because of a few patients I was
• 02:11:17seeing clinically and because of my mentors.
• 02:11:20And I was really struck because
• 02:11:22there are no first line treatments,
• 02:11:25there are no FDA approved medications.
• 02:11:27And then as someone who has a PhD in
• 02:11:30genetics, when I went to the literature,
• 02:11:32we know so little about the
• 02:11:35biology of this condition.
• 02:11:37So with this,
• 02:11:38you know,
• 02:11:39$10,000 pilot grant that I received
• 02:11:41kind of as a second year resident,
• 02:11:43it allowed me to start collecting
• 02:11:45families who were impacted by this
• 02:11:47position and generate important
• 02:11:49kind of preliminary data showing the
• 02:11:52role of specific genetic factors.
• 02:11:54And this preliminary data really has
• 02:11:56motivated kind of a whole line of research.
• 02:11:58So it's fortunately led to more
• 02:12:01donations to additional grants.
• 02:12:03And then last year I got an NIH
• 02:12:06grant that allowed me really to
• 02:12:09transition from being a trainee
• 02:12:11to becoming a faculty member.
• 02:12:14And I should say that this is the
• 02:12:15only NIH grant currently funded
• 02:12:17on trichotillomania.
• 02:12:18I'm hoping it won't remain that way
• 02:12:20for long and that as we do more research,
• 02:12:22more people will get excited in
• 02:12:24the field and we'll be able to
• 02:12:27learn more about this condition.
• 02:12:29So now as a faculty member,
• 02:12:31you know,
• 02:12:32I continue to see and treat patients
• 02:12:34who have trichotillomania as well
• 02:12:36as you know related conditions,
• 02:12:38things like OCD, ticks, ADHD and anxiety.
• 02:12:43And you know in our outpatient clinic.
• 02:12:46And I also kind of continue to do
• 02:12:49research really trying to better
• 02:12:51understand the genetics of these
• 02:12:53conditions with the hope that you know,
• 02:12:54as we learn more about the
• 02:12:57underlying biology that that will
• 02:12:58inform our treatment of these kids.
• 02:13:03And specifically right now
• 02:13:03a lot of the work I'm doing,
• 02:13:05I'm really interested in how we can
• 02:13:07take these new discoveries in genetics
• 02:13:09because they are coming slowly as
• 02:13:12Tom kind of discussed early on,
• 02:13:14but they're coming and how we can
• 02:13:16actually use them to inform early
• 02:13:18intervention and treatment because I
• 02:13:20think that's really the goal is how
• 02:13:22can we make this information useful.
• 02:13:24And as a new faculty member now
• 02:13:26I'm also in the process of kind
• 02:13:28of starting my own laboratory.
• 02:13:30And I'm finding, you know,
• 02:13:32in addition to kind of the two main
• 02:13:34joys in my career that I've had of
• 02:13:36kind of working individually with
• 02:13:37families and doing this genetics research.
• 02:13:39I'm also realizing that I also love
• 02:13:41being a mentor and that getting trainees
• 02:13:44really excited about the field.
• 02:13:46It's been really fun. So.
• 02:13:49So right now a lot of my thoughts and
• 02:13:51and Jamie kind of mentioned this as well,
• 02:13:53but a lot of my thoughts are
• 02:13:55now around kind of how to secure
• 02:13:58funding and donations so that,
• 02:13:59you know,
• 02:14:00other people can pursue kind of
• 02:14:03these important research questions
• 02:14:05as well and work in our center.
• 02:14:07And so that we can all kind of continue to,
• 02:14:10you know,
• 02:14:10help these kids who continue
• 02:14:12to suffer despite kind of our
• 02:14:14available interventions right now.
• 02:14:15So with that, thank you for the time.
• 02:14:19I think I was actually the
• 02:14:21last talk but of the day,
• 02:14:23but so thank you everyone
• 02:14:24for sticking around.
• 02:14:25Thank you
• 02:14:26so much, Emily.
• 02:14:28We have time for questions.
• 02:14:29And Ellie, there is a question
• 02:14:31in the chat directed to you.
• 02:14:35Can you see it?
• 02:14:36Oh, I I do see it.
• 02:14:39The question is around increased
• 02:14:44anti-Semitism on college campuses
• 02:14:46and rallies and social media.
• 02:14:49And how can we help young people,
• 02:14:52teens and young adults coping
• 02:14:54with anxiety in that context?
• 02:14:59And I will say that this is a a topic it's
• 02:15:03hard for me to speak about dispassionately,
• 02:15:07in in part because the horrific events of,
• 02:15:10you know, the past month have affected
• 02:15:13me very deeply on a very personal level.
• 02:15:16So it's not a topic that's easy for me to
• 02:15:19talk about in a in a dispassionate way,
• 02:15:20but I also think it's a really important,
• 02:15:23it's a really important topic.
• 02:15:26How can we help young people to cope?
• 02:15:28I think first of all it it
• 02:15:31doesn't need to be said.
• 02:15:33I think it it's important to first
• 02:15:34of all just ensure physical safety.
• 02:15:36And, you know, I would check in with with,
• 02:15:40you know, the person in your life that
• 02:15:42you're concerned about or thinking about,
• 02:15:44are they actually safe?
• 02:15:46Are they taking steps to ensure
• 02:15:48that they're safe?
• 02:15:48Things, you know,
• 02:15:50like staying,
• 02:15:50trying to like just stay away from
• 02:15:53situations that might actually
• 02:15:55be physically dangerous to them.
• 02:15:58Check in about how they are coping.
• 02:16:00How are you feeling those check
• 02:16:03insurance aside from just,
• 02:16:04you know,
• 02:16:05like you hearing that they're doing
• 02:16:07OK or actually are an important
• 02:16:09source of support when somebody
• 02:16:11just shows you like OK,
• 02:16:12I'm concerned for you,
• 02:16:13especially when you may find
• 02:16:15yourself in an environment where
• 02:16:17you feel more isolated or more
• 02:16:19targeted or things like that.
• 02:16:20I think,
• 02:16:21you know,
• 02:16:21having somebody reach out and just
• 02:16:23ask are you OK and express care
• 02:16:26is really is really important.
• 02:16:27You can ask questions like are there
• 02:16:28things you don't feel like you can say,
• 02:16:30are there places you don't
• 02:16:32feel like you can go?
• 02:16:33And things like things like that.
• 02:16:36I think especially for teenagers,
• 02:16:37it is also really important to just
• 02:16:40help to make some distinctions right?
• 02:16:43Like not
• 02:16:47and not everybody who expresses even say,
• 02:16:50an anti-Semitic trope is necessarily
• 02:16:53a deeply hostile anti-Semitic person.
• 02:16:55There are a lot of things that
• 02:16:57become ingrained in our culture,
• 02:16:58just like biases and implicit biases
• 02:17:00and things that can can apply to many
• 02:17:03other minorities and many fields.
• 02:17:04These things can happen in
• 02:17:06this context as as well.
• 02:17:08I would encourage them to seek out healthier,
• 02:17:12convert healthy conversations.
• 02:17:13It's important to know when you're in
• 02:17:15an interaction with another person,
• 02:17:17are we actually having a constructive
• 02:17:19conversation even if we disagree?
• 02:17:21A constructive conversation where your goal
• 02:17:23is to try to understand another perspective,
• 02:17:26try to understand the other side.
• 02:17:27Or are we having more of a combative,
• 02:17:32you know, hostile kind of inter interaction?
• 02:17:38I would help them to remember,
• 02:17:39again, these are things that are
• 02:17:40harder when you're a teenager.
• 02:17:41Remember like you as an individual,
• 02:17:43you are not the Jewish people,
• 02:17:45you are not the state of Israel.
• 02:17:47You are a a person and sometimes
• 02:17:50that can get a little bit,
• 02:17:53a little bit lost.
• 02:17:54And by the way, I think,
• 02:17:56I mean the question is very good
• 02:17:58and and and very important.
• 02:18:00It is also important
• 02:18:02to remember it's that
• 02:18:03this these events affect
• 02:18:07not only Jewish people,
• 02:18:08they also affect Palestinian people.
• 02:18:10I feel a lot of what we're are
• 02:18:12what I am saying can actually go
• 02:18:14very much for somebody who may
• 02:18:16feel themselves isolated on the,
• 02:18:19you know, so-called other side of this
• 02:18:21particular of this particular divide.
• 02:18:23I would encourage people to try to be
• 02:18:26like more of a learner and less of an
• 02:18:28expert in a lot of their interactions.
• 02:18:30So those are some off the cover kind of,
• 02:18:33you know, suggestions for for this.
• 02:18:39But really I think just showing care and
• 02:18:42staying physically safe are probably the
• 02:18:43two like top bullets for for me.
• 02:18:47Thank you, Ellie.
• 02:18:48Tom, you had your hand up.
• 02:18:53How does one
• 02:18:54breakdown when one wants to study anxiety?
• 02:18:58Seems to me, if you know children,
• 02:18:59you know anxiety.
• 02:19:01And as we've heard today,
• 02:19:04some people are experts and
• 02:19:05spend their careers studying
• 02:19:07something I never heard of before,
• 02:19:08which is GI psychology and
• 02:19:11then others study loneliness.
• 02:19:14How do you, when you try to
• 02:19:16organize what you're going to study,
• 02:19:17there's so many different silos and
• 02:19:21the silos is so deep you can't get
• 02:19:25to the bottom of all the silos.
• 02:19:26So how do how do you sort
• 02:19:28through that then that dilemma?
• 02:19:36Who would like to start with that?
• 02:19:40Well, one one way would
• 02:19:41be to for forget a little bit about
• 02:19:44diagnostic categories that are now a bit
• 02:19:49stereotyped. And they keep changing,
• 02:19:52sometimes for reasons that are
• 02:19:54not entirely clear, and and go
• 02:19:56back to the most fundamental
• 02:20:00reactions of the human brain.
• 02:20:03And and and try to draw parallels
• 02:20:05between what we call phenotypes that
• 02:20:09is any manifestation behavioral or
• 02:20:13physical or motor manifestation like
• 02:20:15stereotypies that we were talking
• 02:20:17about this morning and the brain,
• 02:20:21the brain in this incredible
• 02:20:25multifunctional manifestation at any
• 02:20:27level and and by by drawing those
• 02:20:30linkages we can then probably understand
• 02:20:32how certain disorders because disorders
• 02:20:35are just a collection of this like
• 02:20:37disorders are are not silos themselves.
• 02:20:39You have a little bit of autism
• 02:20:41in Tourette's.
• 02:20:42You have a little bit of
• 02:20:43Tourette's in autism or in anxiety.
• 02:20:45With stereotypic behavior is
• 02:20:47common to many disorders.
• 02:20:48Anxiety is common to many disorders.
• 02:20:50So how do we understand that
• 02:20:52we have to go to the basics.
• 02:20:54That's my feeling.
• 02:20:55Not an easy thing.
• 02:20:59Anyone else,
• 02:21:00I feel like, I mean,
• 02:21:02I'm just checking, I'm not on mute.
• 02:21:05I feel like in a sense almost like
• 02:21:07the answers that you might get from
• 02:21:09the group are and the heterogeneity
• 02:21:10in answers that you might get from
• 02:21:12the group are almost like a little
• 02:21:13bit of an answer in in themselves.
• 02:21:15In the sense that
• 02:21:18you you also follow your passion a little
• 02:21:21bit like what actually sparks your,
• 02:21:23you know, interest For me,
• 02:21:26I like my clinical work to actually
• 02:21:30drive the questions that I'm most
• 02:21:32focused on in in studying Like for me
• 02:21:35those are where the the best questions
• 02:21:37that I come come up with and also like
• 02:21:39thoughts on how to try to address them.
• 02:21:42They come very much from my clinical work,
• 02:21:44but that's not because the correct
• 02:21:45way to get to those questions is
• 02:21:47to like start from clinical work.
• 02:21:49It's because that's the way
• 02:21:50I'm wired and it it, you know,
• 02:21:52kind of makes sense for, for, for me.
• 02:21:54And then you might have another person
• 02:21:56who really has like another approach.
• 02:21:58But I don't at least I can say for myself,
• 02:22:01I think it's probably true broadly.
• 02:22:03I mean you don't really set out
• 02:22:04to solve the field of anxiety.
• 02:22:06You set out to do something right.
• 02:22:08Like you have a,
• 02:22:09you have an idea or a question or you know,
• 02:22:13I think I'm more,
• 02:22:14I'm more somewhat more narrowly focused,
• 02:22:16maybe a little bit more humble kind of goal.
• 02:22:18And then it takes you,
• 02:22:20you know to the next to the next thing.
• 02:22:23Emily, there's a question in the
• 02:22:26chat you is there evidence for
• 02:22:29genetic basis of trichotillomania?
• 02:22:30Yeah. So there is evidence,
• 02:22:34some of it so kind of,
• 02:22:36you know, decades ago,
• 02:22:37there have been for decades,
• 02:22:38there have been family studies
• 02:22:40kind of looking at how these,
• 02:22:41how trichotillomania runs in families.
• 02:22:43Actually Bob King did did some of
• 02:22:46that work at the Child Study Center
• 02:22:48and there were a few twin studies
• 02:22:51as well kind of showing kind of
• 02:22:54the the role of genetic factors,
• 02:22:56inheritable factors as well.
• 02:22:58But I think what was harder
• 02:23:00for scientists until recently
• 02:23:01was kind of to find what are
• 02:23:04specific genetic risk factors.
• 02:23:06So not just that these run in families
• 02:23:08and that there's a genetic basis,
• 02:23:12but that's kind of what
• 02:23:13we're hoping to do here.
• 02:23:15And so the work I'm doing is actually
• 02:23:17the first kind of genome wide approach
• 02:23:19looking at trichotillomania and kind of
• 02:23:22building out for some of the successes
• 02:23:25of what we've done in other childhood
• 02:23:28psychiatric conditions to try and find
• 02:23:30those specific genetic risk factors.
• 02:23:32Because when you think about,
• 02:23:34you know, treatment,
• 02:23:35identifying drugable targets and
• 02:23:38really understanding the biology,
• 02:23:40the neuro circuitry,
• 02:23:41you need to understand what those specific
• 02:23:44genetic factors are that are involved.
• 02:23:47So and I guess that kind of
• 02:23:49leads in to the next question
• 02:23:51I see in the chat from Larry.
• 02:23:54And I don't know if I'm the
• 02:23:56best person to answer this,
• 02:23:57but I will take a stab of
• 02:24:00everyone who spoke today.
• 02:24:02So
• 02:24:03you know I think
• 02:24:05in some fields I think the
• 02:24:07genetics really is getting there.
• 02:24:10So I think in and we have
• 02:24:12some experts in autism,
• 02:24:13so I will let them speak more.
• 02:24:15But in the field of autism now you know
• 02:24:18they've done these genetic studies
• 02:24:20looking at thousands of families and
• 02:24:23they've actually found these high
• 02:24:24confidence what we think of as high
• 02:24:27confidence risk genetic factors.
• 02:24:28And you can identify these in
• 02:24:31over kind of 10% of individuals.
• 02:24:33It's depending on the type
• 02:24:34of cohort you look at,
• 02:24:35but it's a pretty significant
• 02:24:37proportion of kids that you can find
• 02:24:40kind of a specific genetic risk
• 02:24:42factor that you know is associated.
• 02:24:44And
• 02:24:45you know, I think for families,
• 02:24:49you know, knowing why their child
• 02:24:51has a the condition can be really
• 02:24:53helpful depends on the family,
• 02:24:55right, understanding kind of what
• 02:24:58recurrence risk is for other children.
• 02:25:02And some of these genetic
• 02:25:03factors are associated with
• 02:25:05medical comorbidities as well.
• 02:25:06So things like cardiac
• 02:25:07conditions and things like that.
• 02:25:09So I think there are kind of
• 02:25:12implications and right now,
• 02:25:14you know the, I feel like the
• 02:25:17guidelines are rapidly shifting.
• 02:25:19Currently it's recommended by the
• 02:25:22Society of Genetic Counselors that a
• 02:25:26diagnosis of autism you should get a
• 02:25:29kind of do Fragile X testing and get
• 02:25:31a microarray to look for these kind
• 02:25:34of large insertions and deletions.
• 02:25:36But I I think as more and
• 02:25:37more risk genes are found,
• 02:25:39it will be DNA sequencing, right.
• 02:25:42And that's really where
• 02:25:43the field isn't moving.
• 02:25:45And you know,
• 02:25:46I think autism is really ahead
• 02:25:49of kind of other disorders.
• 02:25:50But I think we are going to find
• 02:25:53genetic risk factors and thinking
• 02:25:55about and whether and whether we
• 02:25:57start doing it as clinicians or not,
• 02:25:59people are going to bring our
• 02:26:01genetic results and to us.
• 02:26:02And so we have to think about what to
• 02:26:05do with that and how we can do it to
• 02:26:07help use the information to help families.
• 02:26:10So I think there's a lot of potential there,
• 02:26:11but I think we have to be thoughtful
• 02:26:14and doing the research to find out
• 02:26:16how it can actually help patients
• 02:26:18is really important as well.
• 02:26:20But if others want to add on
• 02:26:22to those thoughts, please,
• 02:26:24please do share.
• 02:26:25Thank you
• 02:26:27something very much, much,
• 02:26:29much less sophisticated.
• 02:26:31You know, Emily,
• 02:26:32what you talked about is like
• 02:26:33insightful and about best practices,
• 02:26:35but in even a more simple way.
• 02:26:36And I think one of you maybe
• 02:26:38Ellie said this, you know,
• 02:26:40being a clinician inspires our science.
• 02:26:42It helps us ask the questions that are
• 02:26:44going to be important to the families
• 02:26:45and the people who are affected by it.
• 02:26:47And with that in mind,
• 02:26:48I also think, you know,
• 02:26:49aside from knowing you know,
• 02:26:53which which gene might potentially
• 02:26:55be involved in this kid,
• 02:26:57as a scientist,
• 02:26:58I think I'm going to do a better job helping
• 02:27:00the parents understand what happened,
• 02:27:02what's happening with their kid
• 02:27:04and answering their questions.
• 02:27:05And so I just think the,
• 02:27:07the model that we all apply
• 02:27:08where we're both clinicians and
• 02:27:10scientists just lets us do both.
• 02:27:12We're both had so much better.
• 02:27:14Thank you, Jamie.
• 02:27:16Well, thanks to everyone and thanks
• 02:27:17to all of you for staying with us.
• 02:27:20And we're still very open to questions
• 02:27:22if you want to send them to us.
• 02:27:25I know, I know there's already
• 02:27:26a few questions that have been
• 02:27:28going to the individual panelists,
• 02:27:30which is great.
• 02:27:31Please do check out the posters
• 02:27:34and the talks that are online.
• 02:27:36Thank you again for all of your time.
• 02:27:37We really, really appreciate your attention
• 02:27:39and we look forward to your feedback.
• 02:27:42And please join into breakout rooms.
• 02:27:44We hope you had good discussions.