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Saul: Welcome to Episode 10 of Life in the Time of Corona, a podcast exploring the many ways to stay healthy and sane in these strange times. I am Dr. Saul Rosenthal, a developmental and clinical health psychologist.
Although most states are now lifting at least some of the restrictions brought on by Covid-19 life has not gone back to the way it was before the pandemic and it may never get there. Adapting to ever-changing health demands along with the uncertainty about our futures is difficult for all of us. It might be even harder for people who are on the autism spectrum, or who have difficulties with executive functions like attention, focus and self-regulation. These are people who often rely on outside structure, routine, and support programs. Nowadays, those supports are almost certainly limited, if not gone altogether. What can be done to help these individuals thrive with so much disruption in their lives?
Today we are joined by Dr. Sophie Bellenis, an occupational therapist who specializes in education and functional life skills for children and adolescents on the autism spectrum. She manages the Real Life Skills Program at the Neuropsychology and Education Services for Children and Adolescents Practice, which specializes in neuropsychological testing and integrative treatment. She also works for nonprofits bringing services to children in Tanzania, East Africa. Sophie works to help young people succeed as they transition into higher education or employment. Sophie, thank you so much for joining us today.
Sophie: Thank you for having me.
Saul: So what are some of the biggest changes that you are going through in your work and your life.
Sophie: That is a big question as I am sure it is for everyone. The changes seem to be really ever present professionally running the Real Life Skills Program was very hands-on. Pre-Covid, we did a lot of community-based coaching, we did shopping, we went to restaurants, we practiced riding the MBTA “T”. We did bus schedules, we did things like practicing Uber and Lyft, so it was all very, very functional and very, very social and in-person, so that transition to moving everything online has been pretty huge. I am seeing clients often more frequently throughout the week than I was. I was seeing students maybe for a two-hour session once a week. That’s now switched to shorter, more frequent check-in sessions to make sure kids are meeting different goals, and those goals have changed. Those goals have really transitioned to more executive function-based goals, so focused on organization, initiation, the self-regulation like you mentioned. So I think that’s what I’d say… you know, it’s this whole switch to digital, which I think a lot of people are dealing with.
Saul: What exactly is a functional or real-life skill coach?
Sophie: A functional skill coach is somebody who is going to focus on those things that are not necessarily thought about in school, aren’t necessarily thought about as skills that need to be directly taught, but often very much do, so the process of going to a grocery store. How do you make a list? How do you navigate the aisles? How do you navigate the aisles with a shopping cart? If you’re going to have some issues with visual-spatial needs, the motor needs of all those things. What does a grocery store look like when you go in there? How is it set up? What are the clues for how it’s set up. Is it something you can just look at? Do you need to be reading things? Where should you be looking for information? So it’s really focusing on building those life skills.
I think that it is really individual. Every student I work with has really varied levels of knowledge in those different areas and that’s for a bunch of different reasons too, right? Some children have learned a lot of it from their parents. Some children haven’t. Some parents teach very different skills, and some kids may have an excellent idea of how to ride the “T” because they live in downtown Boston, but they haven’t figured out how to go shopping independently, whereas somebody living further out… let’s say in Ipswich, Massachusetts might not have a great idea of how to use public transportation, so a coach is really somebody who focuses on where the skill deficits are, and what needs to be taught.
Saul: So it sounds like a lot of the skills are things that a lot of us might take for granted. So, how to know when to wait for the “T” to come, or how long you can expect it to take to get you to where you are going. Or, like you said, like, how a shop is laid out. These are things that a lot of us may be able to figure out more easily. But is it those executive functions that may be showing some deficits in these kids, in these young adults, is that what’s going on?
Sophie: A lot of the time, yeah. You know, I think that these are skills that some students or adolescents do learn by osmosis, as we say… you know, they watch and they pick it up and they figure it out. A lot of the students I work with can learn them, they just need direct instruction. It’s a different teaching method.
And a lot of it is executive function, you know, executive function is that organization that planning that working memory… all of those things that go into organizing and creating goal-directed behavior. My favorite executive function definition is from a colleague of mine, Alissa Talamo, and what she said was that executive functioning can be considered the conductor. So they are conducting the symphony, they’re telling the flutes when to come in. They’re telling the drums went to quiet down. And that’s what your executive functioning skills do. They tell you when to get started on a paper, how to organize the assignment that’s been given to you, how to set alarms to that you’re going to remember it is time to do something. So I think that yeah, there’s definitely deficits in those areas that affect multiple life skills.
Saul: And what are some of the things that you’re hearing from your clients about the challenges they are dealing with, given all of the restrictions?
Sophie: I would say a lot of the main things I am hearing from my clients are that they did not realize how much planning and how much organizing went into their school day that was being run by teachers. Teachers really are these magicians with executive function. They scaffold our kids starting in Elementary school. In elementary school they have visual schedules. They have timers. They have everything color-coded. They have suggestions written on the walls for what to do if you’re feeling overwhelmed, what to do if you’re you are feeling overtired. The whole environment is really designed to promote executive function. Then you know, you go to middle school. You have your lockers. They teach you how to use a weekly planner and get you set up with binders for each course. You move to high school, and it’s graphic organizers.
It is all these different things that are built-in and the reality is that with this really rapid transition to remote education, with this really quick shift into this remote learning period, that stuff has sort of disappeared. Kids are getting emails to all different email boxes. They are using multiple online platforms. Things are being announced really quickly, so they might say you have a Zoom call with your English class tomorrow at 2 PM. The schedules are ever-changing, things are coming kind of out of nowhere, and you do not have the teacher at the end of every class saying, “Make sure to find two articles tonight for your history paper so you are prepared to write it on Thursday”. They really do not have that constant monitoring and that’s what I’m helping them build for themselves. To figure out how to do that independently, which is a huge, huge skill.
Saul: Another big piece for kids online is the social piece, and I really do wonder about that for children and adolescents who already may have some social skills issues. How is that playing out for the clients you are working with?
Sophie: You know, I think in many ways it is playing as you would anticipate. They’re feeling isolated, they’re feeling frustrated. There is a lack of sort of natural understanding of how to make this shift. And these are kids who have worked so hard and that is what I tend to kind of go back to. These are kids who have worked so hard to make friends, have worked so hard to figure out how to be included in this school environment and school atmosphere. And a lot of the students I work have been successful at that. They’ve worked hard to develop these skills. They’ve been successful. They have friends, they have people who understand them and treat them beautifully in their classrooms and this transition has been really tough. It’s isolating.
These are students who have worked hard to be able to do it in person but haven’t focused so much on how to have a Zoom call, haven’t focused so much on how to initiate a text message about a socially distant hangout… let’s call it… and it’s tough, it’s a lot. I think that one way that is less expected that it’s sort of, manifesting, is that a lot of students are reaching out to each other and helping them through this process. You know, I’ve seen students set up group Zoom calls just to check in. Or, I had a student of mine had a birthday and his classmates planned a big drive-by birthday celebration. And so while there is the struggle and there is the isolation, I think it is important to notice sort of, these small human acts of kindness that are coming out of it, and I think that there are communities that are really just thinking of how they can help, thinking of how they can be an advocate within their own school system.
Saul: One of the areas that I have been involved with is technology overuse, and one of the things that got me interested in that was, I was working with a kid who was on the autism spectrum who was socially isolated. He did not do well face-to-face, but he actually had a really nice social life online. The other side of that coin, of course, is technology overuse, where you often have kids have too much of their social life online and there is some at least belief… I’m not really sure of the research out there… but there is certainly some belief that kids on the spectrum are more at risk for that. Are you finding that there is more technology overuse with these kids at this point?
Sophie: Yes and no. There is definitely more technology use across the board, you know, with all the classes and all of the assignments really being computer-based for some students I am working with… I do have some worries about technology overuse. I think that as you said for a lot of students, online friends are friends. Those are their friends, and that connection is hugely meaningful. That can become an issue if it is completely isolating yourself from the people in your life that you are seeing face-to-face and I do worry about that with some students. I would say that that one is really family-specific. It is difficult and it really is dependent on where you live, what your resources are, how you can get outside, how you can find alternatives to that. So I would say it is student-dependent but I would say it is definitely something that I’d consider for all of my students and that can be really difficult to not fall into when there are just so few options outside of that.
Saul: And that is certainly true for all the kids, not just the kids… but all of us… when we’re sheltering in place as they put it. I think that online usage has increased significantly across the board.
Sophie: Yes, I would say that for myself personally, that is something that I am actively working to combat and not always doing successfully.
Saul: It’s always good to keep trying.
Saul: So you’re talking about a whole set of issues… realms, I suppose, that these kids may be struggling with in a different way, given the new restrictions. Certainly, there is certainly the educational, there’s the day-to-day functional work. There is recognizing the importance of planning that other systems and other people used to do. There are the social issues.
I recently read a survey, it was done by an organization called the Spark Foundation, that looked at families with children on the autism spectrum and they found that about 60% of those families reported severe disruptions in services and treatment and less than half of those families reported that their children with autism had any good understanding of Covid and the related restrictions. So I know this is such a hugely diverse group and that we just cannot generalize, but given all of these disruptions in education, in services, in treatments… what are the unique challenges that these kids are facing, whether they’re on the spectrum, or have other executive function issues?
Sophie: Well, in some ways I think they are unique and in some ways I think they are really what teenagers and young adults are all going through. It is the isolation, it’s the learning on the fly, it’s the having to figure out how to do things in the moment. I think that the executive function piece really does have a pretty huge effect if there is a deficit there, mostly in terms of time.
I really think time is what it comes down to. I think your typical high schooler is getting their assignments done. They are working on things, they are doing the recommended 3 to 4 hours per subject which is sort of where, at least in Massachusetts, the recommendations are falling about 3 to 4 hours of work per subject per week. What I think is unique is the amount of time that it is taking for executive function tasks, so the students I work with are doing those 3 to4 hours a week and then probably another seven or eight on trying to get organized, on trying to figure out how to do those three or four hours per class and that’s where I am seeing just some real fatigue and some real exhaustion from this process.
You know, I have students that I meet with for two full hours a week, and all we’re working on is the executive function of their schooling. And that’s a significant amount of time. That’s time when other students are outside, are taking a break and watching a TV show that they enjoy. So I would say there is definitely fatigue in terms of just the effort of needed to organize, the effort needed to set up a schedule, to break down assignments, to figure out how to set their weekly goals, to remember check their three email accounts and their four online accounts and learning platforms that have been provided by the school… and this is in every school district, of course, but there are districts that have really a lot… just a lot of different things that need to be checked and so I would say time. I would say that it is taking up a lot of time.
Saul: Time… It sounds like it is almost taking more time to prepare and organize tasks than to actually do the task.
Sophie: For some of my students… absolutely.
Saul: And that time problem and sort of related fatigue, seems to be exacerbated given the restrictions, given that folks are more or less isolated at home.
Sophie: Yes, I would definitely agree with that.
Saul: So given this fatigue, given some of the social isolation issues, what advice do you have for these kids, for these young adults, for their families?
Sophie: So I have been kind of, trying to give out three simple things that families can do. The first thing I’m saying is create a schedule, and create it on Monday morning. I really recommend that families have a meeting with each kid on Monday morning. I understand that’s a huge ask and it just may not be possible. This can also be done Sunday night… but an early week meeting to lay things out. Figure out when you are going to do each assignment, figure out what Zoom calls you have and have it all written down in one place. This helps kids visually see what each day is going to look like, and the reality is that it looks exactly like what they see at school. This is how we organize kids. It is how we have been organizing them since they are in kindergarten when I said in big block letters, math, PE, snack… That’s how they’re used to looking at their day. So creating that at the beginning of the week, I think, is hugely important.
I also think it is hugely important to have a much shorter, but another meeting at the end of the week to just quickly review how it went. Did the schedule work for you? Do you understand? That’s big. That gives kids a starting point and a starting point is huge if you have executive function issues because initiation is so hard.
The next thing I think is really important is organizing physical and digital space. Physical space is going to look different for everyone, but if students can have somewhere where they specifically do their work, that is set-up, that does not have a ton of clutter, that can be really helpful. And digitally… organizing digitally is really difficult for all of us and it is not necessarily taught explicitly in schools. I have students who it might take them 15 minutes to find an assignment they were working on in their computer because they don’t know what they labeled it, because they probably just labeled it whatever the computer auto put into the field, which is the first sentence that they put on the page which could be, “What do I think about the Korean War?”. You know, it could be anything… it is not organized… so I think helping kids digitally organize their files on their computer is very helpful. A folder for English, a folder for world history, a folder for chemistry, and then teach them to put the date right in the name of the document and a one-word description of what it is. I think that is huge, so that physical and digital organization.
And then the last thing I’ve been saying is just really putting in those movement breaks and putting in those just kind of brain break as we call them. You know, get kids to go for a walk, get kids outside and just really highlight that importance of not trying to power through everything, because we are all getting fatigued.
Saul: Yes so creating a schedule, making sure that it works, organizing the space both physical and digital, and then putting in breaks, particularly for physical movement, getting up, clearing the brain… Those are all pieces of advice that can help these kids stay more or less on track. And of course given the time of the year, I have to ask about the summer. How would you… if at all… modify your advice for the summer?
Sophie: My advice for the summer for students has been, to set goals. It’s a really tricky summer right now, because we do not quite know what to expect. The Department of Education guidelines have come out about summer school, it’s definitely going to look different. We do not know about summer camps, but the reality is that most of them will likely be closed at least through July, and so as school disappears and we need to replace it with something… my advice is to set goals, set weekly goals, set monthly goals.
Think about something the students can do to better the planet, better themselves, and better their own communities. Think about something kids can do that feels productive, no matter how much time it takes. There are some online volunteer opportunities, there are physical fitness goals you can set for yourself. I think that educating yourself on a topic of interest is a great goal to set up, especially with current events being so focused on education and learning. So I would say setting goals is just a really big one, and something that I plan to work on with my clients this summer is building up that process and that ability to set, monitor, and kind of, self-evaluate on how you’re meeting goals. I know that is a little bit broad, but with everything being so individual and everything being so up in the air, I think that it is important for all of us have something we’re working towards, something that we can go to in our free time if parents say, “You can’t be on screens until eight. What are you going to do?” They can go, okay well I have these goals I’m working on, where should I start?
Saul: So in many ways, you really can apply all of your pieces of advice, creating schedules, organizing space, making sure that they move… but it sounds like really the primary change will be the kid themselves, or the young adult themselves, will have to come up with their own goals, likely with assistance from the parents. But trying to keep the idea of the summer being organized around these goals, particularly, as you said, everything is very up in the air. We do not know what is going to happen with… there will be summer school. We do not quite know what is going to happen with camp. Although a lot of the camps have now gone online, which is something actually I did talk about in Episode 8 with Megan Gardner, who runs a camp and a year-long program called Guardian Adventures. So that there will be some things, but as you are saying, just everything is so up in the air that having these goals makes a huge amount of sense and then taking those goals and using them to organize the summer for these kids. As we wrap up, there are some “one thing” questions that I like to ask people who come on here.
Saul: So first, what is one thing that people should take away from our discussion?
Sophie: I would say that people should take away the fact that a huge amount of supports have just fallen away from these students and while there might be frustration about how they are performing in these new circumstances, how they are organizing, it is really important to realize what they have lost and figure out how to add those in in a little bit of a different way. And one other thing that I really do want to mention is that there are positives from this three-month pause on school. There is time here for students to focus on things that they never would have had time for before. Learning how to do things around the home, figuring out how to do computer-based learning which is a reality of college for a lot of students, figuring out how to be bored, figuring out how to fill their time independently, like, there are positives here, another one being that we’re learning how kids can handle self-directed learning. A lot of these students may have been sent off to college and then the surprise comes halfway through the semester, that the executive function needs of being at a university or college are too much for this kid. We are learning that now, when they are a freshmen, when they are a sophomore, when they are a junior… this has given us information and executive function skills are something that in order to build, they need to be directly taught and students need the opportunity to practice them.
That is how you build executive function skills. They need to learn how, and then they need to do it, and do it, until they learn how to do it. And we are seeing… we are getting a premature glimpse at how these kids would do independently, and there is a huge opportunity here to figure out what to focus on and to have them prepared in a different way than we have ever been able to prepare them. So I think, I guess I am answering a little bit of a different question but I think my take away is that there are positives and negatives here and this is a unique opportunity to learn what our students need and figure how to help them in a more future-oriented way.
Saul: So it is actually a theme that has come up in a couple of these episodes, the idea of this being a crisis which provides opportunities and what you are suggesting is one of those opportunities may be to allow or support the development of these skills looking at the future so within what may be a more independent environment.
Sophie: Yeah, absolutely.
Saul: So what is one thing that you are doing to take care of yourself?
Sophie: That’s a big one. I’m gardening obsessively. I ended up moving out of the city to stay with some family for the last couple months and we have been growing everything you can think of, we have peppers, tomatoes, okra, lettuces, so that’s been my sort of brain break and my physical activity outside. I have learned a lot. I have set my own goals. I have met some of them and I have failed to meet others, and I think that is equally important, but yes, gardening has been my big reprieve.
Saul: And finally, what is one thing that the coronavirus experience has changed forever.
Sophie: I think one thing that the coronavirus has changed forever is allowing us, especially as Americans, to see us as completely separate in a lot of ways as completely separate from the rest of the globe. I think that we are in the middle of two vast oceans and we often see ourselves as separate and apart, and I think that there is a really strong reality that we are one world that things that happen elsewhere absolutely affect us. I think that in the past we have not felt that, especially in terms of public health, and I think that just an increase in the overall globalization of how we view the places and the people around us.
Saul: So in some ways we may be learning that we are actually more interdependent.
Sophie: Yes, I would say so.
Saul: This is Life the Time of Corona. You can subscribe to the show at iTunes or wherever you get podcasts. Please rate the show and leave comments. Find out more at my website SaulRosenthalPhD.com, and follow me on twitter and Instagram at DrSaulRosenthal.
Dr. Sophie Bellenis is an occupational therapist specializing in educational and functional skills for adolescents and young adults on the autism spectrum and with executive function issues. She manages the Real Life Skills Program at the Neuropsychology and Education Services for Children and Adolescents program. You can find out more at NESCA–Newton.com. I’ll link to the site in the show notes as well as to the Spark Site describing the survey of how families with children on the autism spectrum are dealing with COVID. Sophie, thanks so much for joining us.
Sophie: Thank you for having me.
Saul: And thank you, listeners. I look forward to continuing the conversation on Life in the Time of Corona.
Saul Rosenthal, PhD July 14th, 2020