Panel Discussion on Research Moderated by Christine Wu Nordahl form the UC Davis MIND Institute. Final Part of the Neurodiversity Summit 2020
Christine Wu Nordahi 0:12
I have the privilege of moderating this panel, which is focused on talking about how researchers can start including autistic and neurodivergent people in research and making our research better aligned with a neuro diversity approach. And so we have this wonderful panel of researchers today. First, I'm going to introduce each of them briefly, but then I'm going to ask each of them to speak for just a couple of minutes about their experiences and including autistic and neurodivergent people and perspectives in their labs and research programs. And then after that, we can begin taking questions in from all of you as you enter them in the q&a box. So first, I'd like to introduce Dr. Laura Lawrence phone. He is an assistant professor in the Department of Psychiatry and Behavioral Sciences at Stanford University. He's also the father of a neurodiverse teenager. His lab advances the understanding of the neural basis of human socio communicative and cognitive functions by using novel neuro imaging technologies. His team devises and implements novel interventions to improve the lives of neurodiverse individuals by maximizing their potential and productivity. Dr. Fong also directs the Stanford neuro diversity project which strives to uncover the strengths of neuro diverse individuals and utilize their talents to increase innovation and productivity of the society as a whole. Also on our panel is Dr. Marjorie Solomon. She is the Oates family Endowed Chair in lifespan development in autism, and a professor in the Department of Psychiatry and Behavioral Sciences. She's also a faculty member at the MIND Institute and the Associate Director of the Imaging Research Center. Dr. Solomon is a licensed clinician with a broad background in clinical assessment and psychosocial intervention for individuals with autism. She has served she has several large scale projects funded by the NIH. Her research program examines cognitive development and autistic individuals through the lifespan. She uses neuro psychology and fMRI to study study this and she's also the research director at the MIND Institute social skills training program. Moving along, we also have Cliff ceren. He is a research scientist at the UC Davis center for mind and brain and a faculty member at the MIND Institute. His research program centers on two broad areas, one is focused on training of attention in emotion regulation, through contemplative practice, and he does some very interesting research on the effects of meditation. His other area of research concern sensory processing and multi sensory integration in autism. And together with collaborators at the Center for mind and brain and the MIND Institute, his team uses dense channel array event related potentials to investigate sensory processing, and how sensory processing challenges likely contribute to the complex phenotype of autism. And last, but certainly not least, I have the privilege of introducing Patrick Dwyer. He is an autistic graduate student, he probably doesn't need introduction, first of all, but I will give my best. He is an autistic graduate student who does autism research in the labs of Susan Rivera and Chris Aaron. He has a unique perspective as someone with a foot in both the autistic community and the academic community. He's an integral member of the Autism Center of Excellence here at the UC Davis MIND Institute. And he's a talented, thoughtful and prolific scholar and scientist. He's also a seemingly tireless advocate, as evidenced by his blog, which can be found at autistic scholar calm, and through organizing events, such as this amazing neuro diversity summit. So now, with those introductions, I'm going to stop sharing my screen so you can see this wonderful panel live. And I'm going to ask each of our panelists to just share a little bit about their specific experiences with the autistic and neurodivergent community and how they integrate them in their research programs. Dr. Fong Why don't we start with you.
Lawrence Fung MD PhD | Stanford | Assistant Professor of psychiatry and behavioral sciences | child and adolescent 4:08
Thank you for the kind introduction, kind introduction, and it's a privilege to be in this conference. It is a very important topic and is really wonderful to be on this panel with other distinguished panelists. So as Dr. Nadeau was
Unknown Speaker 4:33
talking about the the work that I'm involved in, I have been
Unknown Speaker 4:42
leading this Stanford neuro diversity project for now about three years. And basically there there are three major things that we are trying to do one one thing is to improve the employment opportunities for individuals on the spectrum. We know about 80% of people on the spectrum, unemployed or underemployed, and therefore is a very important issue to, to deal with. And the second is the neuro diverse students support program. And our Stanford campus, we provide comprehensive support for our neuro diverse students at Stanford. And the third thing is, as psychiatrists, I also support the mental health, and we are building all different ways to try to use strength based approaches. But overall, basically, when we are trying to do research studies, saying, for example, in the neuro neuro diversity at work program is a specialized employment program for people on a spectrum, what we first of all want to want to know is what what is really the, the experience out there. So we have a very tight relationship with some of the self advocacy groups such as ascend, which is based in San Francisco. And they are the definitely the oldest self advocacy group, run by people on the spectrum in the United States, they are fairly large. And, and basically, we often have several members of that group to be on our quarterly research meetings. And basically, they tell us if we are actually on the right track. And in addition, we also want to bring in other stakeholders. So I know this is really about the panel related to including people that are on the spectrum to design in the research, and so forth. Our concept is to think about the overall ecosystem, who actually will be affecting people on the spectrum. And they should all be considered as stakeholders. So basically, in addition to people on the spectrum, we also invite parents and even the employment specialists in some of our activities. So I teach neuro diversity design thinking at Stanford. And there are there's a workshop that we've recently ran for nine weeks, and we included 90 people that are with different backgrounds. So this is kind of our strategy, to really infuse the different concepts that will represent different stakeholder groups. And that's basically the main thing that we are doing is to include multi stakeholders in our research studies. And we do as much community work as possible. We just had our summit last month. And basically, we have all different stakeholder groups represented in the summit. And that's kind of feeding into our research pipeline, because they would be wanting to participate, and they would give us feedback along the way. And in our group, also, we have neuro diverse individuals in our midst. So when we have research meeting every week, we we often have direct back and forth on exactly what we think is really the views of neuro diverse individuals, or is it only the researcher the researcher is thinking about?
Unknown Speaker 9:02
Great, thank you so much, Dr. film, I think it's really important you are walking the walk already. Well, some of us are still just talking the talk. Next, how about Marjorie, do you want to say a few words about your perspective? Sure. Thank
Marjorie Solomon, PhD MBA 9:15
you, Christine. So I like others to think on the panel as a mother of a parent of young adults who has nonverbal learning disorders so neuro diverse, and so I've been at the MIND Institute now about 20 years. My work started by doing a social skills, developing a social skills training group intervention for children and adolescents with autism spectrum disorder. And that was a family based intervention with a parent component. And I'm also actually a sibling group associated with it as well. So from the beginning, we'd recognize the importance of including individuals with autism and their families and approaches that are being developed to work with them. I've actually because it's been 20 years had the real great privilege of watching a lot of my clients grow up and live their lives. And based on some of the difficulties that some of our adolescence became adults we're having, we founded the Access Program, and then did, I should say that the social skills group program was followed up by an empirical study of our model that proved that it was an evidence based practice. And then several other studies about social skills. But a second study on this model for helping adolescents and young adults with transition known as access, which utilizes cognitive behavior therapy principles, to help people deal with the stress. And to cope with the trend up to cope with the stress of transitions. from that program, we actually realized that some of the best facilitators and leaders come out of that program were individuals and adults with autism. And so they have in subsequent cycles of the program, been collaborating with us as group facilitators. I have several other studies, one of which that I'll mention is a study of adults with autism as they transition looking at the neural correlates of cognitive control. And in this study, we have done a lot of community outreach meetings to our participants, and have tried very hard to share what we're learning with them and their families. We also are proud of the fact that through working with different individuals in that study, as well as individuals in the Access Program, we've taken on several autistic individuals as volunteers, and later have employed them in competitive integrated jobs in our lab and other labs, yours, including Christine, my most recent passion I've been working. And that study that I mentioned, we also look at outcomes in young adulthood. And of course, employment is one of the most critical outcomes in anyone's life. And so we've been looking a lot at what people with autism are doing as they get to that gap in their lives. And honestly, there's not a lot of great research that considers the very diverse spectrum of individuals with autism and what they're actually doing in their 20s with respect to vocational outcomes. So we're working on that now and looking at some data from our study. But we also as part of that have started developing working with a group in Boston, who does vocational work in those with chronic mental illnesses that have a lot of really good aspects that might be able to be incorporated to help people with autism. So in collaboration with Dr. stamer, and the said, and these researchers in Boston, we've been working to try to develop a program that includes a community participated research panel, to actually also try to learn about the barriers, the challenges and the things that make employment environment successful for people with autism. So stay tuned, we hope to develop that model for those individuals in the coming years.
Unknown Speaker 13:37
Great, thank you so much, Marjorie, you do such important work. Cliff, do you want to tell us a little bit about yourself? Sure.
Clifford Saron PhD 13:45
First, thank you so much for the introduction. I want to begin by acknowledging that all of the research that I'm involved in with autism has from the beginning, involved incredibly close collaboration with Susan Rivera, as well as the team at the mind. But Susan, and I sort of have jointly worked on all of this together in an ongoing way. And now with Patrick, we, that continues at a faster pace with his massive productivity and commitment. So my involvement in since studying sensory processing and autism, like many others, on the panels we've had so far, emerges from my experience as a parent who had a child with quite profound sensory challenges. And in many ways, you know, the description by Heather of her experience of the world rang enormously close to home. And in particular, my interest in multi sensory integration and sensory processing arose from a moment that I had with my son, I think he might have been eight when I was reading to him, and I kept noticing that he's never looking at what would appear to be the normative salient point, whether it's the page on the book or something I might be talking about. And at one point, I said, is the eye in your ear turning toward me? And he said, How did you know? And so the idea that neurotypical reference actually understands the sensory and attentional world of someone who may be on the spectrum of neuro divergent and in any number of ways from any number of sources of difference was brought home in a way that was life changing and change my research commitment to begin to investigate how people will process the world. And it's been made clear in multiple moments here, that we're all neuro divergent. And we've we've used the term we're all neuro diverse. And then we've differentiated that for by divergent I think Susan talked about in the beginning, but we all have little divergences or bigger divergences. And so I think that it's critical to add. And it's also come up, particularly, in terms of thinking about, from Elizabeth Morgan's point of view, the intersectionality, of how one has been seen by a larger society, and how structural inequities have contributed to the way one is perceived in terms of receiving services or diagnosis. So, on the early side of things, I have this experience as a parent. And then on the current side of things, we're working with an autistic researcher, Patrick. And there are many, many moments where his personal experience as he may speak about becomes synergistic with the way we investigate our research. And then I'll just close by simply saying, one of the things that we're learning is how variable everyone is it particularly children in their responses to simple sensory stimuli. And so, not only is there no one size fits all, there is no diagnostic solidity that differentiates the diversity of profiles that we're observing with our science.
Unknown Speaker 18:15
Thank you, Cliff, always so profound, really. Patrick, do you want to share with us a little bit about your experiences of having your feet and both
Patrick Dwyer | PhD Student 18:24
sides? For sure. And before I do that, you know, I care about the terminology of neuro diversity. And it's interesting clip what you pointed out about everybody being neurodivergent. And, you know, there's another term which is neuro minority, that might actually be a better one for what we've been calling neurodivergent as being like, different enough from typical that tends to lead to these barriers and challenges. But as a side note, I'm getting to my main point, yeah, I'm an autistic autism researcher, it's certainly not a unique perspective, it's very heartening to see other people like Dora and Heather and so many others doing such amazing, incredible work, but I think it does give me some interesting perspectives. And of course, lived experience is part of that. And that can certainly be very helpful, for example, in studying sensory processing with Susan and cliff, and I'm able to draw on my own experiences of things like sensory overload, but you know, it's it's somewhat limited perspective, because I'm just one autistic person, I certainly can't claim to represent the entire autistic community in any way, let alone all neurodivergent people. So lived experiences and everything. I am a researcher, though, that's a different lens, a different perspective. And it gives me some powerful tools is knowledge of jargon and methods, research, design, and all sorts of things. But it's also kind of constraining and that it has its theories and assumptions that really limit the range of views that one can simply consider the questions of when can ask the approaches and perspectives from which you can view things. And I think really being part of the autistic community is actually perhaps even more valuable than lived experience, I would say definitely It is, in fact, because it gives me access to a bunch of theories and ways of viewing the world different sets of assumptions that are so you know, freeing, and you can really synthesize with the research perspective in a way that allows you to see where one, you know, might be a bit limited. So exactly like Dora was talking about Aspire doing with regard to autistic burnout. I've done any studies quite so groundbreaking Lee important. So those are, I think, three different lenses that I draw on as an autistic researcher. And also I'll just mention quickly, that kinds of research scientists are quite varied in that, you know, on the one hand, I'm working with Susan and Cliff doing neuroscience stuff, putting electrodes on people's heads and looking at their brainwaves. So that's kind of more of a basic science type thing. But on the other hand, as Kristen mentioned, she very kindly reached out to me and asked me to collaborate on some things, I do other work of that variety as well, that sort of more progressive, a, perhaps, or applied, I'm not, that might be more what we think of is associated with the neuro diversity agenda, if you know what I mean. So I have experienced with both kinds of, you know, I think both have their place and role.
Unknown Speaker 21:41
Great. So, um, I have a few questions. But I also encourage the audience to put some questions in the q&a which Patrick, you're also our people are also helping me man them. So I don't miss out on important questions, because I think the timing, it's a little bit tricky here. But I just had a couple of questions that I wanted to ask just in your research experiences. First, I wanted to ask each of you, particularly those who are pis of laboratories, you know, have there been any unexpected situations that you, as a neurotypical person have run into while conducting research or working with individuals on the spectrum are autistic individuals? And I will, does anybody want to start Marjorie?
Unknown Speaker 22:30
So one thing that we have noticed in in my lab, and I think it's just a caution to researchers who are neurotypical working in the field, that you need to be very careful that the message when you're giving participants instructions, and the kinds of questions that you're asking them are things that they understand the same way you are, or at least they explained to you how they're understanding them. Because I think there are times when it can be difficult for people with autism to know exactly what you're saying. So you have to be very careful and check back in with your participants to make sure, especially if you're asking them about more abstract matters, whether you're all on the same page. So, you know, I think you also have to be very careful about inadvertently offending some of your participants. You know, I know, we worked with one individual, he was a volunteer in our lab many years ago, and I was trying to be very direct, and there was a perspective taking issue. And I just said, you know, it's kind of like theory of mind, you know, maybe this would have been better done this way or that way. And he got very offended about the use of the term theory of mind, which I simply used as perspective taking, but he took it as a pathologizing kind of criticism, or even recently, we were doing some work with health interviews. And we asked a question about does your doctor understand your, your health condition, and the participant interpreted that as being that we were saying that autism was a disorder, a disease, and got quite offended, rightfully? And so we realize we really have to be very careful upfront and just explain that we're asking about your physical health here. And you know, we don't consider autism to be a disease. Also, sometimes we kind of went into this last study I was talking about expecting, there would be a lot of group differences. And I deal with mostly people with average or better IQs with autism. And we found that there were actually fewer differences than we anticipated in most of the measures that we were using. So that's really given us some pause. And, you know, then, even moving that further, a lot of another study, we did a while back looked at exceptionality in terms of how people remember things. And their knowledge and awareness of circumscribed interests. So I think sometimes, you know, people with autism are very exceptional. And you have to be careful to watch out and make sure that you catch that.
Unknown Speaker 25:10
Yeah, I think that's such a great point. I wrote down the words that relevant, unethical and offensive from Dr. Amy makers talk because I think it's it's critical to think about these when we're interacting with the participants that we have the privilege of working with in our research studies. I had a question come in from from the audience, what accommodations Have you implemented for autistic graduate students to be successful in academia? And perhaps, Dr. Fong and Dr. ceren could could comment on these on that. Oh, well, sorry. Dr. Fong, why don't you go first?
Unknown Speaker 25:57
Yeah, so um, I, I think it's is really our experience is more like getting accommodations in different settings. And basically, there are students that are neuro diverse and are graduate students, and they run into situations that are making computation very difficult. And with the, with the API's, and basically, we are helping them to, we're basically coaching them, we're trying to get them to, to understand the possibilities of why the pie sees certain things. But we have not been in the situation to actually work with the pie just yet. So I mentioned about what we have in the diversity and support program right now. It's really focused on undergraduate students. And so it's a, it's a very different different kind of concentration. But basically, graduate students in many ways are kind of like working. Because if they are PhD students, especially they are basically working in a lab for several years. And it's basically a job. So we basically take our model of our neuro diversity at work program into kind of the Graduate Student model. And right now, we are trying to start implementing some of that very slowly. But our neuro diversity at work program, we are basically trying to work both with the employer and the employee. So basically, for the Graduate Student side of things, when it's mature, then basically, we should be working with both the PI and graduate students, especially in the transition time. But right now, I don't have graduate students in my lab I I like short, like one year medical students in my lab, and I have research coordinator that's on the spectrum in my lab. And basically, we get give them as much flexibility as possible. And sometimes they need time for going to say, I mean, right now, we're all doing this remotely. And previously, before pandemic, people are just expected to show up at work. So basically, what we have been trying to walk the walk is, if they do need to accommodations, we will provide maybe a day or two that they can just work at home. And if they are not able to have long meetings, we acknowledge that and then someone would look at the clock to remind each other that is one hour mark, we have to stop here. So basically, we, we, we the best way to to know what accommodations will be needed is to ask the person. So if the person is saying, this is the way to make my mean performed best, we'll try to accommodate as much as possible.
Unknown Speaker 29:39
And maybe I should actually go in here. Maybe it's better question for me to answer it then the new cliff. So, so yeah. In my own case, I actually am not seeking out accommodations through an official process and there's several reasons For that, one is my paranoia as an international student, I'm Canadian, like when I started out in undergrad, one of my professors was kicked out of Canada, because his son was diagnosed with autism, disability barriers in to facing international people. And I don't want to get an I'm worried that, you know, going through one of these formal processes would get big trouble for me down the road, or something. But also, you know, there's just the question of as Lawrence is pointing out that it's crucially important, who you're working with, who's the PI and that relationship. And fortunately, I'm working with Susan oakcliff. And we're able to, you know, work together if there's any sort of barrier or issue like recently, we were having some conversations about, okay, I'm not super happy with the timeline on a particular thing, how can we change them, we've developed a plan and change some things and you know, you can do that as well, for neurotypical students, I think it's just a general best practice. So that's worked fairly well, for me. But in general, I do think it's a considerable barrier for people whose p eyes aren't as flexible or accepting or understanding. And it's really problematic as well, to build on another point, Lawrence mentioned that graduate students are both, you know, working, but also students. And so actually, that can sometimes create a division of responsibility where, you know, you have the Student Disability office, and then you have the HR disability office, and maybe there's other offices that need to get into things. And, you know, nobody has a clear responsibility. And so there's maybe, through, you know, send people from one to the other and dodge responsibility. So it can be a very difficult situation, I know, for a lot of my neurodivergent colleagues are also grad students to navigate, and who are trying to get these accommodations through official channels are very complicated. And definitely, we need to make some changes here. So hopefully, Lawrence people like you will be able to promote some changes on campuses.
Unknown Speaker 32:18
So So I just want to have a brief word. I think that, you know, I've been fortunate to work with extraordinarily talented and gifted graduate students whose, whatever their neuro divergence, their strengths have, actually, they're, they're changing fields. So I think there's another level at which one can think about accommodation. And that is a combination of a quality of mentorship, that empowers the, the whatever the obsessive or highly focused interest that couples one's intelligence, with one's contribution to the world, and to actually do as much as one can, as a mentor, to prevent the machinery or the bureaucracy of an institution from impeding in essentially, what might be the sacred relationship between a person and their potential creation, through their work of their place in the world as that unfolds. And if that means they need more time. And by time, I don't mean, you know, some a day a week off. I mean, maybe it's another year or two, in the program, or there, you know, I think that this really needs to be a very intimate collaboration of mutuality, and the potential ation of the student because the world needs to make way rather than we conform and socialize within the academy students to take their rightful place in a suspect machinery we began this day with all been talking about a one would not do what she began to be her professional activity. And Amber, saying, you know, the system was not set up to support the strain. So I think strength based approach across the lifespan is a way to think about this.
Unknown Speaker 34:42
And just one more sense and then I'll shut up, you know, flexibility I think, is also super, super crucial. And, you know, unfortunately, a lot of the existing funding systems you know, really prioritize people going through quickly and don't afford that flexibility that clip was suggesting, you know, allowing people to go at their own pace and everything that was more than one sense.
Unknown Speaker 35:08
That's okay. Patrick, we we always want to hear from you. I think those are all really good points. And I have a couple more questions that I wanted to get to. And I'm, you know, we need to we do need to wrap up in about four minutes. But I just wanted to ask each of you, are there any ways that you've you found it necessary to change the way that you communicate in order to engage autistic individuals in your research programs? Patrick, do you have any thoughts on that?
Unknown Speaker 35:41
Yeah, medium, it might be surprising that I an autistic person would sometimes stumble into terminology issues. But yes, absolutely all the time. Right now, I'm actually collaborating with some researchers at UC Santa Barbara, who are doing this great research, trying to finally get autistic perspectives on a lot of these Behavior Intervention issues that Heather and Auburn were talking about earlier. And just earlier this week, we had an issue where the way that we were communicating was really not received well by people in the community who, you know, feel really triggered and traumatize, by the way that, you know, Behavior Intervention hasn't been done, you know, ignoring community preferences. So even I, somebody who am autistic, myself and part of the autistic community, they'll sometimes find that, you know, it's so it's so crucial to make sure that the way that we're communicating is sensitive to where people are coming from and respectful and affords people you know, dignity and space and is not going to be emotionally triggering and everything, and it's, it's challenging.
Unknown Speaker 37:01
Anyone else have thoughts on ways that you've changed your communication? I think it's important to also, I mean, all of us stumble over terminology sometimes, but to recognize the intention behind it and be a little bit forgiving. I think sometimes, and in some of us that are trying and learning as we go. No Mercury, or anybody else have any thoughts on?
Unknown Speaker 37:28
I think what I was saying, at the beginning, you know, I think you have to be just really careful to check in and to make sure you're 100% on the same page as someone, especially if you're talking about abstract concepts. And if you want to, you know, collect information on abstract concepts through interviews, I think you have to be just careful that you structure the interaction enough and consistently across participants that you're able to get the information that you you want,
Unknown Speaker 37:56
right? Yeah, so what I'm thinking is more like accessibility, like multiple modes of communication modalities, that sometimes can be helpful, and also give them more chances of getting the information. And sometimes the first time around, maybe they don't necessarily get it and to confirm with them that they get it especially for important points of the research study is crucial. So having the person to kind of repeat on certain things that are really important for them. I think that's that's going to be the focus that I will always try to the
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