How COVID Changed Autism Services, with Dr. Michael Alessandri | EDB 289
UM-NSU CARD’s Dr. Michael Alessandri discusses how the COVID19 pandemic forced autism providers to rethink how they deliver services.
Dr. Michael Alessandri is the Executive Director of the University of Miami-Nova Southeastern University Center for Autism and Related Disabilities (UM-NSU CARD). He is also the Chairman of the Board at Els for Autism, and Board officer for Casa Familia, a housing project in Dade County. Dr. Alessandri has been a professor at UM since 1996 and has worked with individuals with autism and their families since 1981 in various capacities. He is a Phi Beta Kappa graduate of the University of Rochester, and obtained his MS and Ph.D. in Psychology from Rutgers University. At the University of Miami, Dr. Alessandri, in addition to his other roles, also serves as the Department of Psychology’s Assistant Chairman for Community Outreach and Engagement. Dr. Alessandri has presented, consulted and published internationally on developing appropriate and effective educational programs for students with autism. In addition, he has received numerous research and service grants and several notable awards within the field including the Autism Society of America’s Wendy F. Miller Autism Professional of the Year Award and National Autism Program of the Year for UM-NSU CARD.
Dr. Alessandri has also received numerous other community service awards, including the March of Dimes Community Excellence in Health Care Award (2007), the Health Services Coalition Outstanding Community Leader Award (2009), and the Parent to Parent Excellence in Family Advocacy Award (2010). He was also named one of the Ronald McDonald House’s 12 Good Men (2008) and the Dewar’s 12 Man of Distinction (2007). In 2012, he was selected by the Children’s Trust as the David Lawrence Champion for Children, one of South Florida’s highest honors for community service. In 2016, the Greater Miami Chamber of Commerce named him their Visionary Leader of the Year; and in 2017, he was recognized by the Dade County Bar Association with the Fostering Inclusion and Diversity Award. Recognizing his outstanding career achievements, his alma mater, The University of Rochester School of Arts and Sciences, named him the Distinguished Alumnus of 2022.
For information about UM-NSU CARD, visit: https://www.card.miami.edu/
For information about Dr. Alessandri, visit: https://people.miami.edu/profile/fb8af2465e6219dc0d6be35a692a7472
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DR HACKIE REITMAN (HR): Hi, I’m Dr. Hackie Reitman. Welcome to another episode of Exploring Different Brains. And today we have returning to us, one of my heroes, Dr. Michael Alessandri. He’s the executive director of the University of Miami – Nova Southeastern Center for Autism and Related Disabilities. And he’s with a bunch of other organizations that he’s going to tell you about, because they’re too numerous. Michael, welcome back.
DR MICHAEL ALESSANDRI (MA): It’s so great to be here. Nice to see you. Again. It’s been a bit, hasn’t it since we met with a little thing called COVID in between. Thanks for that great intro. And yeah got a lot of lot of things to talk about today.
HR: Well, first of all, why don’t you do a proper introduction of yourself, because I couldn’t remember all the stuff you doing.
MA: Sure I’d be happy to. So yes, I’m Dr. Michael Alessandri. I am, most importantly, the executive director of a program called Center for Autism and Related Disabilities. We are based at University of Miami and also have a satellite program in Davie, at Nova Southeastern University. But we’re part of a network of centers called card from around the state of Florida all university based no matter where you live in Florida, any one of the 67 counties you can access all of our services, at no cost to those families and, and people with autism, and also all the professionals and community leaders and businesses and pretty much anyone in the state of Florida who needs to know something about autism can come to CARD and get the guidance and the resources, the information and support that they need. So that’s my primary role. I also, as part of my day job, I’m a clinical professor of psychology and pediatrics.
So I’m very involved in in the administration of our psychology department, I serve as assistant chairman, and also actively involved in teaching, I teach a course in genetic and developmental disorders. And, of course, a whole portfolio of autism related research as well. And then, on top of all that, if you can believe it, I also serve on many boards. I’m currently the chairman of the board of the ELS for Autism Foundation, which is relatively new appointment, just March of 2023. I’m excited about that I get to work with lots of great friends in that capacity. And I’m on the board also of Casa Familia, which is an affordable housing community that we’re building here in Miami Dade County. And I serve on a number of other boards. But as you said, Too many to mention, but proudly, I’m a proud service man in those regards, I think you’ve got to bring your your knowledge or talents to as many organizations and groups as possible, because we all know those of us who have been doing this, as long as you have, and I have know that none of us can do it alone. And it’s really all about those strategic partnerships that makes it all, you know, even remotely possible. Because it’s it’s a lot of work and a big task. And we have so much to do. Like there’s endless amount of work to be done still.
HR: I greatly admire everything you’re doing. And it’s — I can’t even halfway keep up with you just to know what the heck you’re doing now. Answer me this if you could, how have autism services changed by necessity since COVID times?
MA: It’s interesting. Yeah, COVID was a real challenge for all of us in the service delivery kind of sector. You know, I think I think there have been some enormous benefits honestly, to having to learn how to deliver services remotely. We now I think all of us who do service provision, and even those of us in the education or therapy side of things have discovered that you can reach a lot. I mean, we kind of always knew this intuitively, but it always felt a little bit foreign to do a lot of our work through technology. But we now know, we can reach even more people than we were ever going to reach just with live in person kinds of therapeutic intervention. So we you know, we’ve expanded our service portfolio, we’ve expanded even our research portfolio, we were able to deploy, you know, virtual technologies to do some of our parent coaching protocols, we were able to do our support groups, all of our trainings, you know, everything that we do at card and everything that we were doing in terms of our research, we were able to kind of do virtually remotely and and I think that just opened us up to a lot of possibility in terms of how to really use technology meaningfully to disseminate information and to connect with family. So we still now we’re doing a lot of work remotely and connecting with way more families than we ever connected with before. And we’ve refined our practices along the way and, and we’ve also come back live and doing a lot of things too, because you can’t I mean, I’m an old school like I still like to see clients in my office. I still like to see the kids in person to really understand kind of who they are and how they present but I think COVID is created a lot of upside.
Obviously, there were tremendous downsides, too, we have an emerging portfolio of research, even out of our own lab here, that shows that, you know, COVID was stressful, a lot of stress on the parents, a lot of negative impacts on the children. Certainly, the systems of care were really stretched and challenged. And so that — and I think we’re going to be studying, you know, COVID for generations to come, I think, you know, some of the unknowns are, you know, what was the impact on COVID, on isolation, on separation from, from loved ones, on even just neuro typically developing babies, like what are the impacts long term of not having those emotional and social connections, because people were isolated and kind of holed up in their houses without any real human connection. So I think we’ve got a lot to learn still, but I think the autism community really pivoted kind of beautifully, in a lot of ways. I think it was a struggle, I was involved with supporting a number of different schools, and trying to, you know, onboard, you know, virtual technologies and train staff to deliver educational programs and curriculum. And it’s really difficult. I mean, and there’s a real there’s, there’s tremendous inequity in serving the whole spectrum, right? Obviously, the moderate to higher functioning, for lack of a better term or lower support need, individuals were able to do much better with technology. In fact, I would say some of them prefer the technology than going to school. And so we learned that too, but the kids who with more support needs more behavioral needs more difficulties with communication really struggled to get access to the education that they are entitled to. So it’s a real, for lack of a better word. That’s it not to tap into the autism terminology too much. But it definitely is a spectrum of impacts and a spectrum of outcomes. And I think, until we until we really study it for another, I would say another eight to 10 years, we’re gonna we’re going to be learning a lot about the long term implications of COVID, positive and negative on the whole spectrum.
HR: So you feel I’m assuming as I do, that the long term effects of this will be basically a hybrid system of virtual and live working together?
MA: I think so I think the live because it’s still necessary for a, you know, big swath of the population who needs in person, you know, person to person connection. And then I think those of us who are in the business of disseminating information and sharing knowledge and giving resources and connecting with as many families as possible to make sure they get on the right path, are going to continue to use virtual technologies to expand, you know, exponentially what we’re doing and how many people we can reach, you know, pre COVID, we were probably doing, I don’t know, maybe 600 to 800 intakes a year. But now I think we’re well out, we’re going to be well over, you know, probably between 1200 and 1500. intakes that card in a year. In fact, yeah, I think we did 350 or 400, just last quarter alone, that’s way up compared to the old days, when we required families to come in for an in person intake, you know, as I said, I’m old fashioned. So I like you know, the doctor visit. But now we’ve learned we can do a lot of that front loading of onboarding families giving them that initial support, we can do a lot of that in a very meaningful way virtually. And then of course, we can just connect with people more easily, they don’t have to come to the office, we don’t have to drive to Nova of Coral Gables or navigate the university and the traffic and the parking and all the barriers that are really, you know, that create create enormous challenges for parents when they have a child with a developmental disability. So we we’ve eliminated a lot of the barriers. But I think, you know, definitely some upside to all of that. And I think we’re reaching more people, but we have to continue to we can’t lose sight of the, you know, that human connection, I think particularly in the business of autism, where human connection is so much a part of the outcome and the treatment.
HR: Absolutely. Tell us about some of the pieces that your team has published research wise, some of the research you’ve done during this COVID time.
MA: Yeah, so we have I think we just an article actually just came out today one of our most recent so I have to send that to you. Yeah, we just got that notification this morning. So we joined up with an international group of researchers at the beginning stages of COVID. They were based in Switzerland in the UK, and they were interested in collecting data, you know, across the course of COVID from families who had children with varying special needs. So autism was just one… Down Syndrome, Williams Syndrome, you know, several other conditions were included. They created an international consortium of investigators and I was lucky enough to be contacted and to be part of that group. And we collected, you know, extraordinary data from around the world. And our team has been publishing, analyzing and publishing data from the United States cohort. And we have, you know, several studies that have already been published, including one that was based on what we call the spillover effect, which is basically the negative impacts on the parents and how they spill over to the behaviors and the outcomes of the child. And that was published sometime last year, I think, or I’m not even sure the dates anymore, because COVID has messed up with all of our minds when it comes to dates.
And then we had several that are looking at parental concerns about the impact of COVID on their children, which was very interesting, because parents were concerned about losing resources and losing services, the impact long term of the loss of appropriate services for their children and, and the anxiety that creates in the parents going forward. And then now we’re looking at the paper we just published today was looking at, essentially coping strategies in the children during COVID, as reported by the parents, so particularly if the children really understood the implications of COVID, versus the children, maybe with special needs, who didn’t quite understand from the parents perspective about COVID. And, you know, we saw some positive coping strategies, some negative coping strategies, a lot of anxieties, a lot of concerns about the future, a lot of anxiety about loss of services, like all the things you might expect, you know, with a few unusual associations, possibly in some of those papers. But you know, it’s an it’s a booming literature right now, there are tons and tons of papers being published about the COVID experience. So I encourage people to dive into that literature, I don’t know that, you know, were quite able to make sense of it with a singular narrative yet, because there are lots of different types of studies, lots of different kinds of people who were studied and lots of different methodologies that were used. And also, there were different experiences probably across the world, depending on when countries went into lockdown, what that locked down actually meant, for particular family, you know, we saw differences even in the United States, you know, Florida compared to other states, like New York, California, right. And I think politics drives some of that.
But the impacts, you know, I think, again, we don’t know all the answers yet. But we have some, some of these early papers that have come out, I think, tell us a bigger story about anxiety about fears and worries about outcome, and also about how parents and children coped during COVID, which, you know, with some successes, and also some, some failures, in terms of the the ability to really get through that kind of unscathed. I think we’ve all I mean, I think, you know, none of us has been unscathed as a result of COVID. And I, you know, as I said earlier, I worry about, you know, this next generation of kids are the COVID babies, as some are calling them who didn’t have the same social emotional experience growing up, maybe as kids of an earlier generation, because of that lack of human connection, that lack of connection to family, a lack of opportunity to attend daycare, and school, lack of access to life the way it used to be. So I think we’ll be studying this this thing called COVID, for generations, and I think we’ll be studying the kids who were impacted by it, as well as those kids who were born during it going forward. So I think it’s, you know, in a positive way, it’s like, it’s very exciting for a psychological researcher to be living through this time. And then I certainly would have chosen not to, obviously, but if we’re gonna go through it collectively, why not try to understand how this very unique kind of trauma. And that’s essentially what it is, I think we were a country in and are now a country post, to some extent, post trauma, and it has to be studied, we have to understand the implications of that. Because there’s no guarantee there won’t be another significant event like this, whether it’s a global pandemic, pandemic, or some other, you know, life event that causes kind of global trauma, I think we have to be ready for that. And hopefully, learn some lessons. Hopefully, we learned a few things.
HR: And it’s tough to look at the long term, the long term effects might be, which is why your studies are so important to short term and long.
MA: Yeah, I think that’s right, I think the you know, short, medium, long term outcomes are going to be variable. And I think a lot of it will be contingent on how one copes with stress. Right, I think those are the individual differences in coping will be a tariff determinant of that. And sometimes that’s specific to a disability group, if you will. And sometimes there’s, like I said before, right variation in the spectrum in terms of not only the degree of autism, but the degree of one’s ability to cope with stress in the context of autism, so some kids are more anxious than others and react to changes in their routine more than others. And so, you would see expectedly a variation and an outcome but but it’s still important to understand and it’s still important to take lessons from it. You know, as we move forward, we want to make sure that we’re Taking these lessons and informing kind of the treatment protocols we use going forward with all of our kids to buffer them, to the extent possible from from future traumas, with with the right lessons learned, hopefully.
HR: How can people find more about your work? How can they find that more?
MA: Sure, I mean, they can simply contact me at card. Our website is quite easy. It’s www.card.miami.edu. The card system for the state of Florida also has a 1-800-9-, AUTISM line, 1-800-9-, AUTISM, you can call that number and be connected to whichever card is closest to your home. And then of course, you can, you know, visit, visit my personal site at the University of Miami website.
HR: Michael, what is one thing that you think the public might have a misconception about autism.
MA: I think today, the biggest misconception, mostly due to the media representation of autism, is that autism is funny, that it’s great, that it is a unique skill or talent or special gift. And I think that can be true and in many cases, but autism also presents in very severe and profound forms that are often overlooked, because that part of the population doesn’t have the same voice in the conversation, in the discussion. So I would like for people to understand that when we talk about a spectrum, we truly talk about a spectrum. And part of that spectrum, at least to date doesn’t have the recognition that I think is really, really important. And that really is that severe and profound end of the spectrum where parents are really isolated and struggling and the service provision isn’t as refined as it is perhaps for for the more moderate to higher functioning individuals. So we have a lot of work to do to send a more complete message to the public about what autism truly is.
HR: Well, Michael Alessandri re thank you so much for everything you’re doing. Thank you for spending the time here at Exploring Different Brains and we look forward to having you back in the near future. If you have time in your busy schedule. Michael Alessandrini, thank you very, very much.
MA: Thank you. Great to be here.
