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ASD, COVID-19 and ABA: Some high-level considerations for parents and caregivers

Intro: This podcast is brought to you by the LeafWing Center. Helping children and families since 1999. Brought to you by the Clinical Treatment team at the LeafWing Center, this is the Autism Parent Helper Podcast.

Welcome to the Autism Parent Helper podcast. My name is John Lubbers and I’m a Board Certified Behavior Analyst at the LeafWing Center. For today, we want to take a high level overview of some of the things to think about when considering the novel coronavirus or COVID-19, ASD (autism spectrum disorders) and Applied Behavior Analysis. As we say over and over in our culture right now, this is the new normal, at least for the foreseeable, the immediate future. So we thought we would do a brief overview of how we could offer some information to this new normal that we’re all experiencing. This is the first of a series of several podcasts that will really specifically address the Novel Coronavirus and Autism Spectrum Disorders and ABA and how they all intersect. Today’s podcast is really meant to be a high level overview for parents and caregivers or anybody who has a loved one who has ASD or developmental disability and receives ABA or who is just living in today’s world with a developmental disability.

These are the things that we want to bring to discussion, hopefully will kind of shed some light on some subjects and some considerations that we need to have. And then, like I said, we’ll do a deeper dive in later podcasts that will address some of these areas that we bring up today in greater detail. The first thing obviously that all of us are really well aware of is this idea of wearing a mask it’s pretty prevalent depending on where you are in the world, where you are in the country and where you are in your state, your county, or however your government local or national is approaching things. It’s likely that at some point or another, you might have been requested to wear masks or you might be requested to wear them again in the future, depending on how things go. So with respect to that, there are two essentially it started with really, okay.

What does wearing a mask mean? Well, one is we can look at it from the perspective of first and foremost. We have our individual that our loved one who has a developmental disability or autism spectrum disorder and who may be now being asked to wear it a mask that is at school or a adult vocational program or going into the grocery store. What have you so perspective or consideration number one is okay, the person that’s important to me in my life. I need to think about a mask, them wearing a mask. If they’re going to be out in the community or partaking in school or an adult program or something of that nature, depending on where you live and what’s your government, your municipality, or what have you is requiring of you. This may be a reality if that’s the case, we need to start thinking about this.

Okay. Does my loved one wear one without a problem? Or do I need to think about maybe working on a program to help them or asking my autism professional, my behavior analyst to assist with that? And so there’s a variety of things. This is one of the followup topic areas that we’ll go into about sort of mask wearing, looking at some of the literature out there, getting some ideas, discussing some of the things that have been done in relevant literature because there’s not a lot that we’ve already looked into and seen that’s specific to mask wearing. And these masks specifically to contain the spread of germs and contaminants. So that’s consideration number one, with respect to the mask consideration. Number two will be, does my loved one or the one that I’m concerned with teaching, working with supporting, taking to school, et cetera, would they be comfortable seeing masks on other people?

And there’s a probably fairly significant portion of people out. There are individuals that may be a little uncomfortable with that then may cause something of a fear reaction at maybe worst case scenario. And maybe at the best case scenario, it might be something that would potentially confuse them would be something like I don’t understand. Now I’m used to seeing a face that looks like this. Now I see a face that has a mask on the bottom part. Their nose is covered, their mouth is covered. I don’t know what to look at. I don’t get to see lips moving. So there’s mask issues on other people and how it intersects or segways with language in communication and other big picture area that we want to kind of think about is the area of social distancing.

And this is an interesting concept and obviously like we’ve said earlier, that relevant to our times right now, and at least for the foreseeable future, where most areas are recommending that we do social distance, we stay a minimum of six feet away from each other and how this will impact us. This is complicated even for neuro-typical people. We struggle with that when we’re walking, when we’re in deep thought or thing, we’re at the grocery store, we’re thinking about, am I supposed to get chicken breasts without bones or with bones? And we’re in deep thought, pondering those types of things for the recipe. We may momentarily forget about how close we’re standing to the person next to us. So even for us, it’s difficult to really think about social distancing and how we can maintain that at all times, which is what’s recommended to us now projected into somebody with a developmental disability and or autism spectrum disorder.

And maybe somebody who is possible has some difficulties perspective taking or managing multiple things at the same time, keeping two things and action at the same time. These are things that we need to consider as well. Teaching social distancing. Historically, we’ve typically looked at working on teaching social skills and being social in approaching people and talking to them and engaging them. Now we’re almost kind of looking a little bit at a, maybe I don’t want to say the opposite, but now let’s refine that we still want to be social, but now we have a new set of rules and that’s, you know, being six feet apart, not invading that personal space bubble, which we may or may not have, have had a loved one in the past. Who’ve had some difficulty maintaining that personal space bubble. And then thinking about this in terms of the different contexts, again, like we’ve said, if your loved one is going to school, that’s one thing, you not only does the person need to consider where they are, but now there’s 20, 30, a hundred other kids, other students that they’ll need to be aware of to kind of maintain that six foot social distance.

They’ll have to figure out, okay, I need to ask a question of a teacher. I need to approach her or his desk at the front of the classroom, or my teacher’s going to come over to me at my desk. And how am I going to maintain the six feet social distance, but still ask the question. And so there’s a lot of complex things now that have kind of floated up into the world for our kids and for loved ones in our adults and the individuals that we care for on the spectrum or with developmental disabilities. So now issue number two, we have issue. Number one is masks history. Number two is social distancing. And how do we address those things? We’ll look at that as a follow-up in a follow-up podcast as well in the near future. The third thing, the third area that we really need to look at is the area of hand-washing and hand sanitizing and keeping your hands clean to help reduce the spread of germs.

And this is a general good practice. It’s also an area where we spend a lot of time working with people with developmental disabilities, teaching them the skill of hand, washing how to appropriately wash, how to, you know, use the adequate amount of so powder wash for a long enough time. Again, even neuro-typical people, us, everyday folk, we have some difficulties sometimes, you know, or did not know, okay, we need to do this for 20 seconds. We need to wash vigorously. We need to put an appropriate amount of, so we need to be careful on touching the faucet after we’ve washed and the towels and all those sorts of things. So it’s almost like a new skill that we’re relearning. And then additionally, we’re learning that we need to do that more often. So once or twice a day, when we use the restroom, maybe, maybe not quite sufficient now during a pandemic, maybe it’s recommended now our medical professionals are recommending that you do it much more often.

So we need to kind of think about that. So one doing it, washing hands, the correct way appropriately, and then the frequency of when and how we’re going to do it throughout the day. So those are some things that we need to kind of consider. Where does hand sanitizer fit into this equation? Is it used throughout the day when you’re going to the grocery store or the drug store or wherever you happen to be going into, you have to pull on a lever on a door. Do we do use after you leave the store, do you use the hand sanitizer? And so there’s those considerations teaching that skill set as well. The last thing, and the fourth thing that we really want to talk about is this consideration of, I guess, I don’t know really how to call this, but basic germ control or covering coughs covering sneezes and how to best do that.

Also how to do that. And of course, if you sneeze in your hands knowing to go wash your hands afterwards, but there’s that set of skills is like, okay, I’m coughing. I need to cough into my arm or my elbow. If I’m sneezing, I need to kind of cut sneeze into my arm or my elbow. And I need to make sure that, you know, I’m kind of orienting my body away from people so that no germs get past my arm. And now over into the area where the people are that are in my environment. So that’s another set of skills is to teach that. So not only what do we do when we sneeze, but now there’s a new sort of improved way of doing it to best control the spread of germs. So these are the things that we need to kind of think about at a high level, in this new reality that we have during the pandemic.

Like I said earlier, we’re going to do a little bit of a deeper dive on each of these topic areas. We’re going to kind of look into the literature. We’re going to get some examples so that you can kind of draw from those examples and look at them with respect to what may or may not apply to your son or daughter, brother, sister, cousin, neighbor, client loved one. Whoever this person is and see if there’s something that you can gather from that. And also maybe, suggest this as a topic for discussion with your BCBA and the professional in your world. Who’s helping you navigate these waters. Feel free, please, as always to reach out to us through our website, through the podcast, suggest to us topics, let us know what you need. If there’s something that we didn’t cover that maybe we’re not aware of, that would be particularly relevant to the coronavirus right now and navigating the new normal. Please reach out to us through the website. If you would mind please rate our podcast. And we thank you very much for listening. Thank you very much. And we’ll see you on some follow-up topics.

Outro: For more insight from the LeafWing Center, please visit the LeafWing Center website and blog page at LeafwingCenter.org. Email us at [email protected] or visit us at your favorite social media outlet. Feel free to submit questions or comments about this or future podcasts and we will put links to information discussed in today’s show on the website. We look forward to next time. Thank you.

Most Commonly-Searched ABA-Related Questions Answered

Intro: This podcast is brought to you by the LeafWing Center. Helping children and families since 1999. Brought to you by the Clinical Treatment team at the LeafWing Center, this is the Autism Parent Helper Podcast.

Sevan Celikian: Hi everyone. Welcome to the LeafWing Center Podcast here. We’d like to discuss anything and everything related to ABA and autism. My name is Sevan Celikian, I’m a Board Certified Behavior Analyst at the LeafWing Center and with me today are my amazing colleagues.

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Most commonly-searched ASD-related Questions Answered

Intro: This podcast is brought to you by the LeafWing Center. Helping children and families since 1999. Brought to you by the Clinical Treatment team at the LeafWing Center, this is the Autism Parent Helper Podcast.

Sevan Celikian: Hi everyone. Welcome to the LeafWing Center podcast here. We’d like to discuss any and all matters relating to autism and applied behavior analysis. My name is Sevan Celikian, a behavior analyst at the LeafWing Center, and with me today I have my awesome colleagues and fellow behavior analysts.

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Help Your Child with Sleeping Problems – For Individuals with Autism Spectrum Disorders

Intro: This podcast is brought to you by the LeafWing Center. Helping children and families since 1999. Brought to you by the Clinical Treatment team at the LeafWing Center, this is the Autism Parent Helper Podcast.

Manjit Sidhu: Hello everyone and welcome to LeafWing’s podcast. My name is Manjit Sidhu and I am a BCBA with the LeafWing Center. And with me here, I have my colleagues.

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Help Your Child With Feeding Problems – For Individuals With Autism Spectrum Disorders

Intro: This podcast is brought to you by the LeafWing Center. Helping children and families since 1999. Brought to you by the Clinical Treatment team at the LeafWing Center, this is the Autism Parent Helper Podcast.

Rei Reyes: Hello listeners! Welcome to Leafwing Center’s very first podcast. My name is Rei Reyes.

Mari Oganisyan: I’m Mari Oganisyan.

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Help Your Child With Toileting Problems – For Individuals With Autism Spectrum Disorders

Intro: This podcast is brought to you by the LeafWing Center. Helping children and families since 1999. Brought to you by the Clinical Treatment team at the LeafWing Center, this is the Autism Parent Helper Podcast.

Sevan Celikian: Hi everyone, and welcome to the Leafwing Center podcast. Here, we’re interested in all matters, ABA and all matters autism. My name is Sevan Celikian. I’m a BCBA at the Leafwing Center and I’m here with my colleagues.

Rei Reyes: My name is Rei Reyes. I’m a BCBA

John Lubbers: Hello everybody. My name’s John Lubbers and I’m a Board Certified Behavior Analyst with the Leafwing Center.

Manjit Sidhu: And I’m Manjit Sidhu. I’m also a Behavior Analyst at the LeafWing Center.

John Lubbers: What are we talking about today?

Rei Reyes: Exactly. What are we talking about today?

Manjit Sidhu: Potty training.

John Lubbers: We’ll have to do our best not to be obnoxious with jokes, right?

Rei Reyes: But it is difficult. It is one of thosedifficulties that we encounter when working with families. So in our practice, along with our first podcast was about feeding potty training, toileting is pretty much up there as well. So any information we have on this topic let’s go over them.

John Lubbers: Yeah, definitely. It’s something that you know I’m sure we’ve all face clinically. Where are our families? I can remember many times over my career that a family has called me and said, you know John we had something happen. We don’t know what to do this weekend. My, my son or daughter where we were in the grocery store and my son or daughter all of a sudden started jumping up and down and ran over into the fruit section and used the bathroom and Oh the mortified us and everybody else. And so it happens. And I think, statistically there’s some numbers about people that with autism spectrum disorders and how frequent these potty problems are. So it’s definitely a relevant issue in something that we hear a lot from our parents.

Sevan Celikian: Absolutely. And toileting, as we all know, it’s a very critical life skill. It’s absolutely necessary for many reasons, first of all, for hygiene but it can also improve an individual’s quality of life, self-confidence and it can also reduce bullying and other altercations that individuals may come across if they don’t have the appropriate toileting skills after a certain age. So why don’t we define what we mean by toileting? So the definition of toileting based on the studies that are out there is two fold. It refers to recognizing the need to go to the toilet and also the ability to complete the steps necessary to eliminate in the toilet.

John Lubbers: And that’s also super important there further discussion on both. So when you say recognizing what’s kind of implied right there is that I can sense internally in my body when I need the bathroom and I can respond accordingly. Now the response part is kinda, what do they say? The devil in the details, right? There’s a lot of skills that we’re finding are involved in the response. You have to, you have to get up. Yeah. And that’s not so easy for some of our individuals, you have to get up, you have to identify the location of the bathroom, you have to go into the bathroom, you have to undress at some levels so that you can use it. Then you use it. That’s a skill. You engage in hygiene behaviors afterwards and then you leave. So it’s a complex series of.. [INaudible]

Rei Reyes: It is a very complex chain of behaviors. If we’re going to go off behavior analytically about it, it is quite complex and that’s where I think the difficulty lies. Teaching one of those steps, like walking to the bathroom is something, but walking to the bathroom, turning on the light and then walking into the faucet, to the sink is another thing and that’s where I’m most, well, most of our, the pharmacy we work with as a difficulty they’re having in teaching that chain of behavior.

John Lubbers: Given how complex it is, it’s almost kind of amazing. I say this kind of jokingly, but it’s almost kind of amazing the two year olds and three year olds are able to get this.

Sevan Celikian: It’s not just the physical processes, it’s the social process.

John Lubbers: Yeah. That’s an important thing.

Rei Reyes: Yeah. I think for our typically developing children, this is usually picked up around the age of three and four I believe. Yes.

Manjit Sidhu: Mostly by the time they start preschool

Sevan Celikian: But it’s important to note that individuals with developmental disabilities such as autism spectrum disorder, they’re more likely to have ongoing difficulties and more difficulties than your typically developing child. Yeah. So that’s where some of the difficulties come into play, which is what we’re going to get more into detail in today’s podcast..

Rei Reyes: There was a study out there in ’96 and basically what the researchers had said is that at least about 82% of individuals living with autism have some form of difficulty in this area. 82%. That’s pretty high for me. Thinking about it now, over the years working in this field, it’s pretty accurate. Because I very rarely encounter a family with a child who’s got those skills down already. More often than not, there is something lacking, in the way they do things in the bathroom. And so what do you think guys, is that 82%, you think that’s a stretch or pretty much where you think it really is in your own own experience?

Sevan Celikian: In my practice, that seems like an accurate figure, especially with the younger population, a younger population as well.

John Lubbers: Yeah, definitely.

Sevan Celikian: And speaking of a studies Rei, Mattson in 2010, used the profile of toileting issues, the “POTI,” which is a 153 point questionnaire. The results of that indicated that there were five common or most commonly reported problems in terms of toileting, which were having toilet accidents during the day, having toileting accidents during the night. Having had wet underwear in the past month.

John Lubbers: Well, can I just interject really quickly guys? I think too that when we’re talking about toileting is a problem or a challenge and we’re talking about specifically, our population of autism spectrum disorders, I think,we probably wanna like it conceptualize it in two ways. One, conceptualize it in terms of assessment of the problem and then maybe secondarily conceptualize it or think about it in terms of what are we going to do about that problem? Okay. Do we have a problem? What is the problem and what are we going to do about it? So I think that that’s what you were kind of getting at Sevan was this really nice article by Mattson and colleagues and it’s a recent article in the last 10 years, I believe, if I remember correctly and it looks at, it’s a nice comprehensive assessment. 56-Question assessment, right? A lot of the issues with respect to assessment and a lot of what with potty problems.

Rei Reyes: I think for that study, really the driving force there is like what John touched upon earlier is having something to really define how hard or difficult the toileting is for a specific person. , Because normally in our practice we say, okay mom, dad, , what’s the problem with your child? , What does he not do in the bathroom? ? And so we kind of like just approach it that way head on, , without some, well, we do try to consider as much information that we probably don’t know at the moment. We try to find out,like a medical conditions, medication, all that. But we don’t really have a specific tool that we can use, more like a standard, even for our own company, we have different approaches and how to tackle this area. And that’s where, that’s where POTI comes into play. These authors, really their goal was to have a standardized assessment to define what the problem or difficulties in the area of toileting. Inform us that way and in a way have a make it drive the program or the intervention package that we have for toileting. What drive? What does that mean? Basically,one of the authors there mentioned that, if there is something, if there is a medical condition that will prevent the person from having having a successful potty program, toileting program, then address that first instead of just blindly getting into a toileting program, which will likely fail if you don’t address whatever the party has identified. So in a way, I like POTI, rom that perspective it is an effective tool. I think. I haven’t used it yet, but I can see where the utility is going to come from if I’ll be using this.

John Lubbers: And specifically the authors describe the POTI as a screening measure that examines toileting problems common to those with ID standing for intellectual disabilities and the problems ranging from constipation to exhibiting challenging behaviors while toileting. So it covers a wide range of things and parents, you may know that if you have some psychotropic medications, if you’re a child, or the individual that and your loved one has some psycho,psychotropic medications that they’re taking, sometimes the side effects of those medications can be constipation and that can really complicate things or sometimes with certain diets,it can be maybe self-imposed or maybe even, elf-selected. If an individual only eat certain foods and avoids fibers and what have you, or things that would facilitate, diestion and passage, avoding of solids sometime by choice, diet can can contribute to constipation, which can be a problem and that can be something that we have to address, one wy or another. Additionally, taking into consideration problem behaviors and that’s an important thing as well. So the POTI assessment and the article that we looked at this week, it loos like to be a nice comprehensive assessment in terms of gathering information about potty problems.

Rei Reyes: Yes. So I know listeners have noticed this about Dr. Lubbers did say ID intellectual disability, someone helped me out here, but there is a study out. I said, I think it was the same authors. They did mention that a good number of individuals living with autism have some form of ID as well, some degree of ID. (That’s True). Although this study did not specifically have individuals living with autism and their study that diagnosis can transfer over to our ASD population as well. I just want to bring that up since some of may have thought about that question.

John Lubbers: Yeah, that’s a great point, Rei and what I would imagine the authors, Mattson and colleagues will do with respect to this is they’ll rerun studies like this and include individuals with other disabilities. I think it’s reasonable to expect they’d probably, you’ll get similar outcomes. There’s not a big difference that we’ll find statistically between the populations is at least is what I would see and what I’ve seen in research in the past. So very good point with respect to that.

Sevan Celikian: That’s true. The research has shown that up to 75% of individuals living with ASD do show some level of ID and this was found by Mattson, Shoemaker and Crone in the early 2000. So it is typically co occurring, which is important to note.

Rei Reyes: Well a few things actually that I find interesting with this POTI assessment is that they found a correlation between the level of ID and the degree of the difficulty. So basically the higher the degree of the ID is of the ID diagnosis is the higher the scores on the assessment, which means more difficulty. Another thing that they have found is that non-verbal, I’m assuming individuals who cannot talk, since we can get into what verbal means. So individuals who do not talk, non-ambulatory on fiber or laxatives,are also likely to have higher POTI scores as well. So this study was quite informative when it comes to those aspects. So anything else on POTI guys, folks?

John Lubbers: Well, there were four big results from that. And you talked about Rei which is great, which is really interesting. So the big significant results they found were non-verbal individuals had significantly higher scores, non-ambulatory or folks that can’t walk easily or walk much at all and then,third,was,individuals that were using,fiber or laxatives also scored significantly higher or meaning they had more difficulties with potty issues and then like you said, Rei, the last thing was the level of intellectual disability and those that were more disabled had more problems, more intellectually disabled, more profoundly effected and then those who had less word less profoundly effected. So those are four kinds of interesting conclusions. There was really, interesting to see that they came together with those results.

Rei Reyes: In terms of function, we mentioned this earlier this assessment tries to forgot function. The potential functions that can be assessed by the potty are avoidance, pain, social difficulties, non-compliance, internal cues, peer rejection aversive parenting, shame, deception and medical conditions. And as we’ve said earlier if the assessment finds that one or more of these are a difficulty then if applicable, it’s best to address those difficulties first before getting into an actual intervention.

John Lubbers: Yeah, that makes sense. Always rule out the medical and those other potential contributing variables. I think it’s kind of interesting, probably for our listener to kind of understand, we’re talking in the abstract about the POTI assessment. But let’s give, if you don’t mind, I think we’d be worth maybe giving some examples of some questions on it and explaining to the listener a little bit about how you respond on the POTI, the assessment. So,it says the scale is completed by clinicians with individuals, primary caregiver. So in other words, a parent or a caregiver would do it with somebody with a pediatrician, with a behavior analyst, with somebody to do it. So not uncommon in terms of the administration and the questions are answered as either, azero, no problem present, one problem present or X does not apply. So, and here are some of the questions guys. For example, question number one essentially is does not urinate in the toilet. And so the caregiver respond zero, noproblem present one problem present or X does not apply. Another question is only urinates or defecates a small amount. So same answers a strategy there. Another one is has food allergies. Another one is hides wet clothes and then it goes all the way down to things like, has alack of appetite, or doe not independently perform most self-help tasks. So it covers a lot of things and it’s fairly easy to read, fairly easy to understand. And the response how you respond to it, it’s fairly easy as well. So I, I’m really like..

Rei Reyes: Yes and unlike other assessments that we have used over time with our clients, this has a lot of very specific detailed question that we don’t usually I guess see in other assessments like for us clinicians. So we use Vineland. Some of you folks may have already heard about it or maybe even done it. If you recall, there was probably a couple of questions about toileting there and that’s what makes the POTI I guess more powerful assessment to use than other assessments available out there.

Sevan Celikian: That’s true. That’s one of the major advantages of full-scale measures like the POTI. It really helps to guide intervention simply because there is so much detail included in the questions and the answers and it’s so simple to administer. Basically, the higher the score on the POTI, the greater the toileting difficulty is. And so this is why I’m using this in our practice or in other clinicians practices can really have a positive effect on guiding effective interventions.

John Lubbers: So I think as a clinician, I would say that I’m, I’m inclined to begin using this assessment (Yeah, definitely) and I think I would probably recommend it to our families that work with your clinicians, your pediatrician or your behavior analyst. If you’re struggling with these kinds of issues at home with your son or daughter or loved one and you are not sure how to approach it, obviously I would suggest reaching out and starting this type of assessment. This would be good. Go a long way towards providing some initial information.

Manjit Sidhu: Yeah. It’ll definitely help the parents and the practitioners gain a comprehensive insight on what the function and that way you can put together an effective treatment plan if what the function is.

Rei Reyes: Speaking of intervention, can we introduce this topic?

John Lubbers: Yeah. I guess one last thing I’ll say is just that Mattson, Horvitz and Sipes in 2011 the article that we’re referring to,do you discuss in there, in the article that they’re going to do further research and that they will further refine their scale? So like all good researchers, they’re going to work on that and get that assessment better tooled in tuned up.

Rei Reyes: This concludes part one of leafing center’s podcast regarding toileting issues. We encourage you to continue on with parts two and three. These segments are readily available to you for your listening convenience.

Outro: For more insight from the LeafWing Center, please visit the LeafWing Center website and blog page at LeafwingCenter.org. Email us at [email protected] or visit us at your favorite social media outlet. Feel free to submit questions or comments about this or future podcasts and we will put links to information discussed in today’s show on the website. We look forward to next time. Thank you.