ASRC Talk: 10 Reasons Why Research Rocks

October 04, 2023

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00:09I'm a professor at Yale and my
00:11training is as a clinical psychologist.
00:15So my doctorate is in thinking about
00:17how kids think and learn and how we can
00:20help them think and learn in ways that
00:23are going to be most useful to them.
00:27I'm also a scientist, and as a scientist,
00:31what we study in my laboratory is the brain.
00:35And really, those two things intertwine
00:38very tightly because the work that we do
00:41as scientists is to try to understand
00:43ways that we might interpret what the
00:46brain is doing so that we can better our
00:50ability to help kids as psychologists.
00:53So let me give you an example right now.
00:56If I wanted to think that,
00:58think about what might be most
01:00useful for a child, say to,
01:03you know, to pay attention in school,
01:05what I would do is talk to that
01:07child's family and, you know,
01:09learn what they've observed.
01:10I would have a conversation with that child.
01:12I would play with that child.
01:14And I would use all of that information
01:16with my clinical experience and what I
01:19understand about what's been tried before.
01:21And I would make a suggestion
01:23about what could be done.
01:25What we hope that as scientists
01:27is that maybe we could understand
01:29things about the brain that would
01:31let us do a better job at that.
01:33Like,
01:33what if I could take all the things
01:35that I see and all the things
01:37that parents tell me about,
01:39but then also combine that with something
01:41that I can measure about a person's brain,
01:43about their biology?
01:45It might give us more specific information,
01:48it might give us more sensitive information,
01:51and we might be able to
01:53do more useful things.
01:54Maybe we could do a better job of
01:56figuring out what treatment or whether
01:58a treatment would be useful for that
02:00child or might show us whether what
02:03we're already trying is working.
02:05But those are the that's the work
02:07that we do is to try to to see
02:09whether things that we can understand
02:11about the brain
02:14who to help us better as psychologists.
02:18The We're really aware in our scientific
02:22laboratory that we we do our work in
02:26partnership with autistic people and
02:29with families of autistic people.
02:31We we can only learn things
02:34when we all work together,
02:35because we're really good at some things,
02:38like measuring how the
02:40brain does certain things.
02:41But really, we can't do that unless
02:44people who have autism or people
02:46who live with autism are willing
02:48to work with us to learn together.
02:50And so we recognize that we you
02:54probably recognize that as well.
02:56If you're watching this,
02:57if you have some kind of connection to
02:59the Autism Spectrum Resource Center,
03:01you probably care about autism,
03:03you probably care about autism research.
03:06You may think that it's really important.
03:09And really we've given lots of
03:11talks on the Internet.
03:12We can actually lots of talks for
03:15a SRC and most of the talks that
03:17we do are really about the science
03:20and the reasons that we think the
03:21science is going to be helpful.
03:23But today I want to talk about
03:25research in a different way.
03:27I want to talk about why.
03:29Well,
03:29the title of the talk is Why Research Rocks.
03:32But there's 1000 reasons why research rocks,
03:35why it rocks for you.
03:37I want to talk a little bit
03:38today about 10 reasons that we've
03:40thought about in the lab,
03:41that research can be beneficial for a person,
03:45for a family.
03:46I want to talk about some of the
03:48misconceptions people have about research.
03:50Things that people might worry
03:52about that are not founded,
03:54that are not realistic worries.
03:56And I want to talk about some of the
03:58things that we strive to do so that
04:00we can make participating in research easy,
04:03fun,
04:03worth your while so that we can
04:05all achieve shared goals about
04:07understanding more about autism in a
04:10way that's helpful to autistic people.
04:13The first thing that I'm going to
04:15talk about is actually something
04:17that people get confused about,
04:18about research.
04:20I want to clarify that participating
04:23in research in our lab at Yale
04:27is totally confidential,
04:28and it's totally private.
04:31No one will know that you came
04:34in and participated in research.
04:35It doesn't get added to any kind
04:38of medical record at Yale.
04:39Your doctor doesn't know.
04:41Your child's school doesn't know.
04:43Your employer doesn't know.
04:45It's something that is really personal,
04:48that is confidential,
04:49and I think that's something that
04:51people sometimes wonder about.
04:53So that's the first thing I want to clarify.
04:56Participating in research is confidential.
04:59The only exception,
05:00the only person who could let people
05:03know you participated in research is you.
05:06And the second thing I want to
05:09talk about relates to a reason
05:10why you might want to tell people
05:12that you participated in research.
05:15Because when you participate in research,
05:18you are also receiving a clinical
05:23service in a different kind of way.
05:27And I say that because you may
05:28want people to
05:29know that you've gotten that clinical
05:31service because you might get useful advice
05:33that you want to share with your doctor,
05:35you want to share with a school,
05:38you might even want to share with your
05:40employer if you're an autistic adult.
05:41Different kinds of things that I'm
05:43involved with here at Yale and
05:44that our team is involved with,
05:45and one of them is a
05:48developmental disabilities clinic.
05:49Now this developmental disabilities
05:50clinic was started in the 1980s.
05:52It was founded by a mentor of mine,
05:55Fred Volkmar,
05:55and it was one of the first psychological
05:59clinics in the country and in the
06:01world that was specifically focused
06:03on working with people with autism.
06:06So it's it's got a very strong reputation.
06:09There were a lot of clinicians,
06:11psychologists, psychiatrists,
06:12speech and language pathologists
06:14in this clinic who really care
06:16and who knew a great deal about
06:19working with people with autism.
06:21And is it?
06:22When you come to a clinic,
06:25any clinic for autism,
06:27somebody's usually paying, whether it's you,
06:30whether it's an insurance company.
06:33You're also, unfortunately,
06:34often dealing with some kind of waiting list.
06:37There are many families.
06:39But here's the secret about
06:41research is when you come in to
06:44participate in a research study,
06:45you're actually getting an evaluation.
06:48Just like you get an evaluation in
06:50a clinic with actually the exact
06:53same experts who work in the clinic.
06:55But there's But you're not your
06:57insurance not being charged,
06:58You're not responsible for any
07:00kind of copayment.
07:01You're not paying out of any
07:02of your own money.
07:04This is just a part of the research.
07:05So anytime someone comes in
07:07to do a research study,
07:08they're getting a very thorough evaluation,
07:11looking at diagnosis if necessary,
07:14looking at the way a person's learns,
07:16their strengths and vulnerabilities in
07:19ways that might be very relevant to school.
07:22And then you're also going to get as a
07:24part participating in research a report,
07:26a written report that is just
07:28like what you would get in,
07:30in a clinical evaluation.
07:32And that is why I brought this up
07:35in the context of confidentiality.
07:37Many people find those reports are
07:39extremely useful to bring to school,
07:42to share with doctors,
07:44to share with therapists or even in
07:47terms of understanding themselves.
07:49So that's the second thing that I
07:51want to highlight about research
07:52is that when you participate in
07:54research you are becoming a part
07:56of a of a of a clinical process.
07:58I also want to highlight that
08:00it's not a one and done our our
08:02team isn't going anywhere.
08:04We're here many people who get
08:06involved in our research over
08:08time come to rely on our team for
08:10clinical input and clinical advice.
08:13And so it's really by becoming
08:14a part of our kind of broader
08:17community research participants,
08:19you're actually availing yourselves of
08:21of our expertise in an ongoing way.
08:25The third thing that I want to mention,
08:27I kind of hinted at it already.
08:29But when I said that you don't have
08:31to pay to participate in research,
08:34that is true, but it's not the whole truth.
08:36The whole truth is that actually you
08:38get paid to participate in research.
08:41We respect that you are busy.
08:44We respect that you have many things
08:45going on and that your time is valuable.
08:48And so when a family comes or
08:49when an adult comes to participate
08:51in research independently,
08:53they're compensated for their time.
08:55And this is part of a bigger pattern
08:58that we hope you would proceed
09:00in terms of us trying to be very
09:02aware of the things that could make
09:04it difficult for a participant,
09:06a person to participate in research.
09:08And we want to make it easy and worthwhile.
09:11So for sure that's paying you for your time.
09:14For sure,
09:16that's thinking about your schedule,
09:19making ourselves available in the evenings,
09:22on the weekends if you need to.
09:24It's thinking about the difficulties that
09:26you might experience in getting here.
09:28We're glad to cover the cost of
09:31your transportation or your gas.
09:33We always pay for parking for
09:35people who drive here.
09:36And you don't have to worry about
09:38finding a parking spot in New Haven,
09:39which can be a challenge.
09:41So we thought about all those
09:43kinds of things,
09:43and we keep thinking about
09:45these kinds of things.
09:46One thing that we realized recently
09:48is that the kinds of the the way
09:51that we measure brain activity
09:52requires a person to wear a cap.
09:54That can be difficult
09:55with certain hairstyles.
09:56So we'll work with you.
09:58Maybe you have braids and you're
09:59going to get them out to get
10:01them taken out to rebraid.
10:02We would love to understand the
10:04scheduling of that so that we can
10:06plan a visit when the braids are out.
10:08So really we are.
10:10We try to be really thoughtful
10:12about all the things that can
10:14make it easy or hard for a person
10:16to be involved in research,
10:17and we're really motivated to make it easy.
10:19So these are some of the things
10:20that we've thought about.
10:21But if there are things we haven't thought
10:24about it we want to hear from you.
10:25Please tell us.
10:26Now,
10:27the fourth thing I want to mention
10:29is something that is also a
10:31way of kind of rewarding people
10:33for participating in research.
10:35But it is so important that it
10:37has to be numbered separately and
10:40that is food we love to eat.
10:44And we understand that when
10:46you are here with us,
10:47it doesn't mean you won't get hungry.
10:50And so we're going to make sure
10:52that you're food needs are met.
10:54We have lots of snacks,
10:56snacks that are appropriate for moms,
10:58dads, kids, adults.
10:59We will feed you if you happen
11:03to be here at a meal time.
11:05Now the one thing that we don't have
11:06is a kitchen and a kitchen staff.
11:08So I can't promise that
11:09we're going to cook for you,
11:11but we will ensure that you are
11:13fed good food while you were here.
11:16So that's another thing not to worry about.
11:19The fifth thing that you may not
11:22know about participating in research
11:24is we also recognize that people
11:26sometimes have multiple children.
11:28As a matter of fact,
11:29many of us have multiple children.
11:31And what I want to do on a given day
11:34is a combination of what I actually
11:36want to do and what I can do while I'm
11:39also providing care for my children.
11:41So that's something that we
11:43can help with too.
11:45If you have a child that is autistic and
11:50you would like to participate in research,
11:52and let's say you have other children
11:54that aren't eligible for the study,
11:56ring them and our staff will spend
11:58time with them, entertain them.
12:00We have many toys,
12:02we have movies and we want to ensure
12:07that the your need to look after your
12:09family is not something they would ever
12:12get in the way of being involved in research.
12:15So we are scientists,
12:17we are clinicians and what we need to be,
12:20we are babysitters.
12:21So that's something that's
12:22important for you to understand.
12:24The sixth thing I want to highlight about
12:27participating in research is that it's fun.
12:30It tends to be fun.
12:32Most of the people that work
12:34in this field are people who,
12:36you know,
12:37got interested in psychology or got
12:39interested in child psychology because
12:40they like people and they like kids.
12:43And so when you if you're
12:45an adult or when your child,
12:47if you're bringing a child to
12:50participate in research comes in,
12:51you're probably going to have the
12:53experience of getting to meet a lot
12:56of people that you enjoy meeting.
12:58Adults often enjoy talking with
13:00our team members,
13:01maybe learning about some of the things
13:02that are taking place during a visit.
13:04Kids love, often love coming in for a visit.
13:08We have many,
13:09many toys in our waiting area.
13:11We've got lots of ways to entertain them.
13:13We've got a whole team of very enthusiastic
13:17research fellows who enjoy playing with kids.
13:20The place is decorated in a way
13:23that's really welcoming,
13:24doesn't look like any kind of
13:26doctor's office.
13:27We actually let you do graffiti
13:29as part of one of the procedures.
13:31A little sticker goes on your head
13:32and you can pick anywhere on any
13:34one of our walls where you can
13:36stick that sticker up on our wall
13:37and leave your lasting mark.
13:39So pretending in research can
13:41actually be really fun because of
13:44the people that you interact with.
13:47The seventh thing I want to say
13:48is that it can also be really fun
13:50because you have the opportunity
13:52to learn about science.
13:53Now,
13:53I'm a little bit biased because I think
13:56that few things are more fun than science,
13:59but I have observed that many of the
14:02people that come in to be involved
14:05in research also enjoy science,
14:07and there's a few things that really
14:09emerge as highlights for people.
14:11One is when we measure a person's
14:14brain activity, the way we do it,
14:15as I said, is with a a hat that you
14:18wear that picks up electricity.
14:20But then we can set it up so that
14:22you can actually see the electricity
14:24that is being made by your own brain.
14:27So we can have you sit in a chair
14:28and show you on a computer screen.
14:30The pain is actually doing,
14:32we can show you how if you do something
14:34like move your arms or clench your jaw,
14:37we can actually see how that
14:39activity changes.
14:40And so that's pretty cool.
14:43Relatedly, we also can give you,
14:45if you'd like,
14:46a picture of yourself wearing one of
14:48these brain hats so that you have a
14:50souvenir of what you look like when
14:53you were giving your brain activity.
14:55We're also really,
14:56really happy to talk with people
14:59about the science,
15:00why we think that the work
15:02that we're doing is useful.
15:03But we always want to wait until we're
15:07done with the actual work with you to
15:09tell you about what the science means.
15:11Because we want to make sure that the
15:13ideas that we have about what might be
15:16happening during a research study don't
15:18don't change your expectations in a
15:19way that I could kind of mess things up.
15:22So always let ask. Always.
15:24People can always.
15:25There's lots of questions.
15:25We'd love to talk about the science,
15:27but I always know we might say,
15:28hey, wait,
15:28let's wait until we're done with
15:30the things that we're doing today.
15:33The eighth thing that I want
15:36to mention is swag.
15:38Everybody likes swag,
15:39and so we make sure that
15:42people leave here with swag.
15:44Kids who come in get to choose a toy
15:47from our prize box, which is fun.
15:51Adults,
15:51We have lots of different kinds of things,
15:53from chapstick to coffee mugs.
15:56I will say that I recognize that
15:58our lab is fueled on coffee and
16:00many of the parents who come
16:02in seem to have the same fuel.
16:04So we take very seriously the
16:07Mcpartland Lab coffee travel mugs
16:09and we hope that you'll you'll
16:11leave with one and and use it to
16:14keep yourself fueled around town.
16:16If you if you like different
16:18beverages other than coffee,
16:19we have cozies to keep your can
16:21of soda or whatever beverage.
16:22It might be cold while you're
16:25outside in the warmer weather,
16:27so getting goodies to take home is
16:29also part of participating in research.
16:32The last two things I want to
16:34mention are bigger picture things.
16:36The ninth thing is that when you
16:38come in to participate in research,
16:40you are actually helping to
16:43create an environment.
16:44That is training the next
16:48generation of psychologists,
16:50of doctors,
16:51of scientists who are about to dedicate
16:55their lives to to autism and autistic people.
16:59So our lab actually is 16 people here who are
17:03not you know, I'm cooked, right?
17:05I'm a I'm a professor.
17:07I'm I'm always training unofficially,
17:10but my official training is done.
17:12There are 16 different people
17:14in this lab who are training,
17:16who are in route to getting their doctorate
17:19or moving towards being ready to start
17:21their own lab or getting ready to go
17:24to medical school or Graduate School.
17:26And it is so valuable for them to
17:29prepare to be independent in the future,
17:32to have the opportunity to exist
17:35in a vibrant research community.
17:37So by coming in,
17:39you are actually creating the
17:41setting that trains the next
17:44generation of leaders in autism,
17:46which is something that I
17:48think is is so important.
17:50The last thing that I'm going to mention is
17:54something that I I think everybody knows,
17:57but when you come in and
17:58participate in research,
17:59you are changing the world.
18:01We do research in autism that is designed
18:05to change what is understood about
18:07autism in ways that make a difference
18:10in the lives of autistic people.
18:13And so when you come in,
18:15you are creating knowledge,
18:18you are cocreating information techniques,
18:22clinical practices that are going
18:25to that mean that things will be
18:28done differently for people with
18:30autism in the future and done better.
18:32And that I know from many of
18:34the people who come in,
18:36it's not about a coffee mug,
18:38it's not about a meal or money.
18:41It's about the opportunity to make this a
18:45world that is better for people with autism.
18:49And so that's something
18:50that's really important.
18:51We we try to make sure that everybody
18:54who comes in and participates
18:55in research with us,
18:57who helps us cocreate knowledge gets
18:59to be a part of our ongoing learning.
19:02We most of the time,
19:04people write up the results of
19:06what they learn and put it in
19:08a journal where it's only going
19:10to be read by other scientists.
19:12We do that too,
19:14but we realize it's a problem.
19:15So what we also do is we have
19:17a section of our website,
19:20mcplab.org, where we put summaries of all.
19:25So all the things that we learn that go on
19:28to these scholarly journals that are full
19:30of jargon and full of technical details,
19:33we put summaries online so that
19:34families who come in and work with us,
19:36so that participants who come and
19:38work with us, you don't have to be a
19:40scientist to understand why it matters.
19:43And we think that's really important.
19:46The last thing I want to mention about
19:48our mission is that that we are respectful
19:51of all different kinds of autism.
19:54We live in a time where it's really hard to
19:57know what having autism means for a person.
20:01To know what it means for a parent.
20:04And there are many who want to really
20:07aggressively intervene with autism.
20:08And there are many people who want to think
20:11about autism as a source of strengths.
20:13And we see the benefit in all of these
20:16approaches and the work that we do is
20:19really designed to understand because we
20:22believe that the more that we understand,
20:24the more that we can help any given person.
20:26And for some, you know, for a parent,
20:29that might mean helping their child
20:31produce a word or look them in the eye.
20:33For a person with autism, that might.
20:36It could mean anything.
20:37It might mean feeling more comfortable
20:39having a conversation with someone.
20:41It might also mean nothing to
20:43do with social things.
20:45It might mean getting some knowing,
20:47more effective ways to treat things
20:49like the anxiety or depression that
20:52affect many people with autism.
20:54So we're really thoughtful about how
20:56autism can mean so many different things,
20:59and we truly try to keep that close to our
21:03to our hearts in the research that we do.
21:07Those are some things that we think
21:10you might appreciate as reasons
21:12why autism research rocks.
21:14We're happy to talk to you
21:16about any of these things.
21:17We're happy to hear your ideas.
21:19We're happy to talk about the nittygritty
21:22scientific details of what we do.
21:23Be in touch with us.
21:25Our e-mail address is
21:33mickp-lab@yale.eduourwebsiteismcp-lab.org.
21:33You can find lots of detail there.
21:35And our e-mail address is
21:37MCP dot LAB at Yale dot Edu.
21:42So as a part of every research study
21:45that we do, we we the the first
21:49thing that we do is an assessment.
21:50We want to understand a few things.
21:52One, oftentimes, not always,
21:54but oftentimes we want to confirm for
21:57research purposes and autism diagnosis.
21:59And so we would do an assessment.
22:02There's a couple of different ones
22:03that we use the brief observation,
22:05the symptoms of autism or is the
22:08Autism Diagnostic Observation Schedule.
22:09They're called the they,
22:11they have acronyms BOSA and ADAS that
22:14one of our clinicians would do with
22:16a child or would do with a mother
22:18or father and child and we also
22:22would do a cognitive assessment or
22:24might also call it like an IQ test.
22:26And that gives us a sense of where a
22:28person's developmental levels is also
22:30really important for us for interpreting
22:32the results of our research studies.
22:34So those are the pieces
22:36of a research evaluation.
22:38Both of those,
22:39when you're done with an evaluation,
22:41we, one of our psychologists,
22:42writes up a report,
22:43then gives the results to the family
22:46along with the recommendations that we
22:48have clinical recommendations for school,
22:50for therapy,
22:51for what have you based on
22:53what we've learned.
22:54So that's what a research
22:56assessment looks like.
22:57It does have summaries of the studies that
23:00are ongoing and for which we are recruiting.
23:03If you sign up for our newsletter,
23:05we also include in each
23:06newsletter a little kind of each.
23:08In each newsletter we highlight one
23:10of the studies that's going on so
23:13that people can learn more about it.
23:15There's a question whether participants
23:17can be duly or multiply diagnosed.
23:20Yes, they can.
23:21There's there's sometimes nuances in
23:23what is appropriate for any given study.
23:26But in general being duly or multiply
23:29diagnosed is not an issue at all.
23:32In fact,
23:33in some studies it's something
23:34that we're really seeking.
23:36I will one thing that I'll highlight
23:38is one of the things that's really
23:40important to us right now is historically
23:42there have been a number of groups
23:44that have really been excluded from
23:47neuroscience research and autism.
23:48One really important group is people
23:51with autism who have intellectual
23:53disability or you might call it
23:56profound autism or severe autism.
23:58And so one of the one of the one of
24:03the main studies that we're doing now
24:05actually is really to try to make
24:07up for lost time and involve people
24:10who have autism and I Q's below 60.
24:13So we would also have a diagnosis of
24:15intellectual disability to be able to
24:17participate in our neuroscience studies.
24:19And and so that's ongoing because
24:21there's so many different kinds
24:23of health and medical conditions
24:25and some of them would make a
24:27person ineligible for a study.
24:28The way that we handle that is
24:31that we would ask people to call
24:33in to us or to e-mail
24:34and we have a our intake coordinator whose
24:37name is Bella Ponyevich and who would
24:39talk with you in detail for two reasons.
24:42One, so you can know exactly what
24:44the study is about and make sure it's
24:46something that is of interest to you.
24:49But two, so she can ask you
24:51all those kinds of questions,
24:53you know, depending on your age,
24:55depending on your IQ, depending on
24:57other conditions or medical issues,
24:59there might be studies that are a good fit
25:01for a person or not a good fit for a person.
25:03And so we would figure out all of those
25:06things through the screening process.
25:07Is there a set number of visits?
25:10How frequently will folks visit?
25:12It depends.
25:13It depends on which research study it is.
25:17For example, there are some research
25:19studies that might be done in a single day.
25:21There are some research studies that
25:24we're doing where we're very specifically
25:26interested in how a person changes over time.
25:29And some of those research studies
25:31we might expect a person to come in,
25:33you know three separate visits
25:35over the course of six months.
25:37So it really varies.
25:38All those those details are usually
25:40detailed on our are usually included
25:42on our website and Bella would let you
25:44know all of those kinds of specifics.
25:48You can have received TMS previously
25:50and still come in to participate
25:53in our TMS study.
25:54Those of you who aren't clear with
25:57TMS is TMS stands for Transcranial
26:00Magnetic stimulation.
26:02And what this is,
26:03is a technology where you just use
26:05a very strong magnet that you hold
26:08against the person's scalp and it
26:10sends out a series of magnetic pulses
26:13that stimulate a brain region.
26:15And one of the research studies that
26:17is ongoing in the lab is seeing how
26:20stimulating certain brain regions
26:21might improve certain feelings
26:23for people with autism,
26:25or it might change certain
26:26behaviors or change some of the
26:28things that we see in the brain.
26:30Participating in a prior TMS study does
26:32not rule out participating in one of ours.
26:35We would want to talk with you in
26:37detail about what was being stimulated,
26:39what green regions were being
26:41stimulated in the other study.
26:45And we want to think carefully
26:48together about what timing makes
26:50sense so that our that our TMS
26:52stimulation can be done responsibly
26:54with respect to what's been done before.
26:57Really a lot to think about.
26:58And I there's definitely,
26:59you've said there's just so much
27:00value to this research being done,
27:02not not just the swag and the the
27:04stickers and the the snacks and whatnot,
27:07but there's just so much that
27:09this research produces for us to
27:11better understand autism.
27:12Doctor Mcpartland,
27:13I thank you so much for not only
27:14for the research that you're doing,
27:16but for spending some time with us today.
27:19You have definitely given me a lot to
27:21think about as well as our viewers.
27:23And I thank you for all the work
27:26that you
27:26do. You and Yale Child Study, It's amazing.
27:29Likewise, we're so grateful for our
27:31collaborations and partnerships with ASRC.