Part 2 BCBA Autism Insights: Medication, Behavior & Quality of Life

This episode highlights that improving behavior in autism requires a holistic, individualized approach that goes far beyond therapy alone. Medication can be helpful when tied to a clear goal and guided by simple, objective data, but it must be used thoughtfully to avoid unnecessary complexity. Equally important are lifestyle factors—nutrition, sleep, exercise, and allergies—which can significantly influence mood and behavior, often in ways individuals cannot verbally communicate. Parents play a critical role by observing patterns, “listening” to behavior, and adapting strategies in real time, sometimes hour by hour. Creating a meaningful life involves balancing structure and productivity with leisure, while also ensuring consistent engagement with the community to build confidence and connection. Above all, flexibility, collaboration, and a long-term mindset rooted in the idea of “not yet” reinforce that progress is always possible, and the ultimate goal is not just reducing challenges, but helping each individual build a fulfilling and purposeful life.

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Transcript

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Welcome back everyone for part two of our conversation with a real BCBA, Mr. Glenn or Glenn Carter, who's been doing this for over 15 years. And if you didn't watch our first episode, I encourage you to go back to the last week episode and watch our conversation. And then we're going to continue talking about interventions for those that require maybe more support or those that are combination. You've got someone that's lower support, interacting with someone that's higher support. Where we ended the last session where I'd like to pick up today is the impact of medications. And I'm thinking about our son in particular. He has seizures. He's on literally four different anti-seizure medications. And we've changed those a lot over the years because some seizure medications created more aggressive behavior. And he just seemed to be a little bit more agitated. He seemed to be a little bit more stressed. And even interventions, that behavior really didn't change. And so we ended up going with a different mix and his behavior moderated. And so Glenn, I don't know if you have any stories like that or examples, but just how does an awareness of medications or other things that other professionals, therapists, medical and then mixing things up a little bit has had a positive impact. I. Remember I once worked with a 10-year-old that was on a cocktail of medication and that cocktail was a cocktail of this medication gives this side effect, so we have this medication to come to that side effect, but that also has this side effect. So we have this medication. And it's just like, whoa, whoa, whoa, whoa, whoa. Guys, this is so much. What are we doing here? And then it really starts with the first question for the parents. It's like,"Hey, why are they taking medication? What are you trying to change?" And it was quite simple. He used to be aggressive. Okay, okay, okay. So let's start this story again, is that we want to keep aggression low or close to zero rates or once every six months, because sometimes people get annoyed, but we want to really keep the aggression to a low amount. And then what we did is we worked with the parents to both take data at school and at home so that we got accurate measures of aggression we went back to the doctor with that info. I was like,"Here's the baseline on this cocktail. This is where we're at." And then in sharing that information, the doctor was able to say, "Okay, well, actually, let's take this one out first and see what happened." And we went through that process in an iterative manner until actually that we got to a point where that learner was now medication free because the original reason was the aggression. They're able to live a life without medication and the aggression, and we don't need any medication. And that's one extreme example of how you've gone from the cocktail to nothing, but there have been many times in my career where I've been working with a learner, and especially things related to ADHD, like their ability to focus in lessons, and that's all kinds of different lesson formats and things like that were a real struggle and they've been given a medication and it's a,"This kid doesn't need support anymore." This medication's been incredible for this, genuinely changed their life. Their ability to focus, their ability to do the things that were being asked of them has now been fixed. I think the biggest flaw in the practice of prescribing medication is that it's often reliant on parent stories to the doctor of how things are going. So the doc says, "How's everything going? " And then a parent might say,"Oh yeah, everything's fine." And it's very use in the actual information that the doctor is receiving. I think the number one rule for you're trying to make changes to medication is identify exactly what the reason for the medication is and then develop some kind of measure and it needs to be as simple as possible. So say if it's for aggression, you're going to have a calendar and you're going to star the days that there was aggression and you're going to leave it blank when there's not. And then that immediately communicates to the doctor,"Oh, I can kind of see how this is." Or similarly, if you're doing a medication for sleep, just having a very simple sleep tracker of this is the bedtime, this time they fell asleep, did they wake up as normal? Just a very simple check, check, check, or check, X, check, to really be able to communicate that with the doctor. Really though, when it comes to medication, I do defer to what the doctor says. And then as you work in the field, you start to get a feel for doctors that some tend to be far more liberal with their prescription medication and some tend to be far more conservative. And again, as you develop your practice, you might be able to work with the parents and say that, "Hey, if you feel this is too liberal for what you as a family want, if you feel more conservative about medication, then these are some doctors that kind of are in that way and vice versa." And so really it's just about matching what the family wants with the right doctor for them and giving the doctors good measures back of how things are going. That's super. And I want to also talk about other things that I know you've had experience with. One's nutrition, one's exercise, one's allergies, and the fourth one's sleep. So with our son, when it comes to nutrition, if you eat a lot of sugar, which he did before we knew he needed a low carb diet, well, of course that jacks him up and then he has the crash afterwards and it affects his behavior. Whereas if he just eats a decent breakfast, something that loads him up with carbs or whatever that won't give him that sugar hit right off the bat, it's more of a moderate release or protein. His behavior is more normal throughout the day. We've also discovered that he was allergic to certain things. When he was little, he was allergic to strawberries. He wanted strawberries, strawberries, strawberries, but more strawberries, he ate the more agitated he became, even though he loved them. So knowing what, and we have guys right now at J13 that, believe it or not, when the weather turns, some of them will have reactions because molds and pollens go up. And so they have an allergic reaction. You don't know that. They can't articulate that, but you know their behavior changes and you can associate that then with the weather. Also, if Michael gets a lot of exercise, on some days that does mitigate his aggression. He gets to ... All that stress is taken care of through walking or hiking or running or basketball, whatever it is. And so he seems to be calmer and milder in the evenings. And then the fourth thing is as a result, he sleeps better. And so if he wakes up with a good night's sleep, he usually is easier to deal with just like we all are. And. Well, what gives him a good night's sleep? Well, exercise the right nutrition and knowing what out. And so it's this combination of everything, certainly absolutely look at that. But then if medications aren't an issue or you think that I've got handled, that doesn't mean everything's handled. Any experiences or stories or suggestions you have with any of those four? Yeah. So I think that you can put those all under the umbrella of being hypersensitive. So are you hypersensitive to changing weather? Are you hypersensitive to pollen change? Are you hypersensitive to sugar? And I think one of the things about the diagnosis of autism is that it's a very sloppy diagnosis. It's more of a big bucket catchall of these are all kind of in the same ballpark. We haven't been able to tease out the difference between different things. And so it kind of remains in the bucket because Rett's disorder used to be part of autism diagnosis, but then they found some genetic markers that were able to tease that out."Oh no, no, that's not autism. That's its own thing." And in the long term, I believe that's what will happen to the whole diagnosis of autism is that little strands will be brought out of, "Okay, so this is actually this and this is actually that. " But that's a future. We're now in our reality. And I think as parents, and in fact, Mike, this has been a lovely thing to watch you as a parent, is the understanding that parents have for their kids goes far beyond anything a therapist has. Sometimes your understanding of what he's saying or what he's trying to communicate. To me, I'm oblivious. I've known Michael a long time, but I think there's nothing quite like a parent understanding of their child. And then once you have that understanding, so you've identified, man, they always struggle on cloudy days. It doesn't make any sense. They struggle on cloudy days. And then once you identify what those things are, there's two things we can do. So especially for things like nutrition, there are other helping professionals, nutritionists, and I would lean on their input because they have the expert understanding for that phenomenon. And then the second thing I'd really recommend is how do you change the day based on these things? So going back to the individual where they struggle on cloudy days, it's almost like, okay, what's our cloudy day plan versus our non-cloudy day plan? And that sounds silly, but also that's what we do. When it's cold outside, I wear a jumper and I bring a jacket with me. And when it's warm, I wear shorts. And so we're already making changes to our behavior based on the weather, but it's just for some people, that change can be far more dramatic and so we want to make that more dramatic change. And then you were talking about exercise and similar to nutrition, I think it's something that everyone benefits from. If you're a human, I think it's quite reasonable to say that exercise is beneficial to you. But one of the things I've really been reflecting a lot on in my time with J13 is the schedule of leisure versus work and that some adults with intellectual disability, really they're given too much leisure time. It's like, I don't know what to do with you, so can you just go and watch the show? I don't know what to do with you. Go and read those Dr. Seuss books that you've read 8,000 times, read 8,001. And sometimes we give our community members too much leisure time. And then sometimes we also have the equal opposite of like, you got to work, you got to do these chores, you got to help out with a family. And I really think that everyone has their own cadence of this is a healthy schedule of leisure and this is a healthy schedule of work. And working with Michael, I actually think that he actually benefits more from work. He does better. He's much more sociable. He's happier when we are doing chores and getting tasks done than when we're trying to do things that we would say are fun, but he actually doesn't find them as fun as other community members. And then so I think it's about understanding your child's cadence, but I think they need to be more productive. I think that they need to be doing more things. And so really increasing that and then equally being aware of the opposite of like, I think they need to relax more. I think they need more downtime. I think we really need to develop their interests and going back to like those Dr. Seuss books, what are things that we can do to expand that library of books that they find interesting? Or if they like to do puzzles, what are the ways that we can make those puzzles a little bit more challenging? And maybe for some people actually, it's not about the increase in challenge that makes it leisurable. It's just the act of doing that. And so I think about when adults do things like those adult coloring books, they might not actually get any better at them, but they find a relaxing thing to do. Or if you go to a golf course, everyone says that they have handicapped 14 and it's going down and it goes down. It's been 14 for the last decade. And so you're actually just in the same place, but being in the same place in leisure can sometimes be fine because the activity itself is value enough. And I think parents, that's really something to reflect on. Is this leisure activity good as is or is it something that needs to be changing and evolving? That's something, again, thinking about the, not, how do I just stop you hitting, how do I stop you waiting, but just a, how do we build a good life? Hey, if you show a real interest for this, then how do I make sure that you have opportunities to do those things? I think that is such a huge point. And it's something that I'm not sure there's the consensus on. So I really want to get your point of view. One of the things that we try to do at J13 is get the crew out into the community every day. And you could argue maybe that's not optimal for everyone. And so part of the thinking that I think every parent goes through, and I'd be interested in your perspective on this too, Glenn, is when is good, good enough, right? Our aspiration and our belief at this point for most folks, including our own son, Michael, is we always want him to be challenged to a certain extent. We always want him to be learning and growing. We don't care whether he's 36, 37 or 45 or 55, that there's always something just innate in a human being for challenge and accomplishment and trying a little bit harder. But there's also the opportunity for leisure. And if you find a sequence of leisure activities or certain things that work well and they're pretty consistent, why change that? So what we're trying to do is match up. We want them to be out in the community, just like real people like to be out in the community. Neurotypical people like to be out in the community. So no divergent folks, even level three autism or special complex needs shouldn't be so isolated just because that's easier, right? Just because they're going to be less problematic, it's easier to put them all in a campus environment or a farm environment away from a community. That doesn't mean that's ideal. It just means it's easier to manage. But we get them out in the community and they get used to being around neurotypical folks and they're not disruptive and they have fun and enjoyment and they mix and mingle. That to us seems to be healthier. And then couple that with the right amount of leisure, but also enough structure. And I think the amount of structure, as you talked about, is different from everybody. Michael likes to work, and I think you're right. He enjoys the routine and the sense of accomplishment when he's done his laundry, for instance, and then he takes all his shirts and he puts them in the sock drawer. He doesn't care about them putting the ... He just likes putting his shirts away and he's very happy that he put them away. He doesn't really care whether they put them in the soccer or shirt drawer or the pant. Drawer. I think that one of the things for all of the types of jobs Michael likes to do, he likes the visual completion. Yes. He doesn't like to be told that it's done. He likes to visually see this is now done. And the same with doing the dishwasher. He loves to close the kitchen cabinets to be like, okay, now we're done. Everything's closed and put away. That visual reinforcement is so powerful for him. But going back to your point about how often they should do it and being in the community, I think a couple things. One is we learned from the children that grew up in COVID that they lost out on all those small interactions that happen in childhood. And then when they get to school, it's like, why is this so much harder for this generation of kids? Oh, because they didn't get to experience the world in a healthy way. And unfortunately, for many children with disabilities, that's also true of their childhood, that they had some real challenging behavior that really made it difficult to bring them into the community, especially in their young ages. So increasingly, as a parent, so much of your life is in survival. It's like, I'm just trying to make sure I get the groceries. Yeah, perfect parent brings Michael along, but I need groceries because I've got to cook dinner, so Michael's going to stay home and I'm just going to grab the things I need and then dinner's going to be on the table. That can really be what a lot of childhood is and it really takes deliberate actions to bring them back out into the community. And then so when we arrive in adulthood, recognizing that almost in the Maslow's hierarchy of needs kind of that there is an inherent value that all humans experience from then the question is, what is the dose of healthy access to the community? Is this something that you need to do once a week? Is it something that you need to do seven times a week? But between seven and one, there's a number that's right for you. And so currently J13 has up to three days a week. And I think for most people, three days a week is good. That's really healthy. I know that some of them could probably do more and some actually two is perfect right now or once a week is perfect. And I think also recognizing that people change. So today I might work with someone that once a week, that's where they're at and you know that this is kind of the routine that works for them, but that works today and in six months, a year, a decade's time, that can change. And it can turn to twice a week or three times a week. And I think being responsive to your child and recognizing that it's not, oh, we've checked this off the list. Community has been scheduled in the way that works for us and that it's all great, but just recognizing how is this community action working for us? They go to a climbing gym on a varying schedule, but the individuals that are getting the most out of that climbing experience are the individuals that are going most regularly. And the other irony of this is, it has a sharp learning curve. It's really hard to learn to climb. It's really hard to learn how to move your body in that way. And so when you start actually once a week or once a fortnight might be where your body's at and that's actually healthy starting point. But to get to that position of being a regular climber, really enjoying that you can do the more challenging holds and things like that, you really see the benefit of it with the regular actions, I guess. And also the other thing that happens is you start to recognize the staff. When you go week and week and week and week, you start to know some of the staff's name, they start to know the community members' names. And again, this idea of community, it really starts to be established. You just show up at the same place at regular intervals and community starts to manifest. I think it's a really lovely thing that J13's been able to achieve. You. Mentioned a keyword here, and there was a keyword mentioned last week or two weeks ago with Howdy Homemade. The word you keep talking about, which I really like is recognize. And so to recognize what your child needs or your teen or your young adult needs, you got to listen. And that doesn't mean listening to what they say. You've already talked about nonverbal listening, right? And parents do have sort of an intuitive feel. And dad's out there, I think you got to defer to your wives in most cases because moms know and they're more closely connected, I think usually with the kiddos. I. Disagree. Okay. Tell me why. I. Think especially if the child is male, I think that the dad can see the male perspective really well. Oh, I. Like that. Ah, stop that. He's alone. He's fine. And I can discredit any parent's experience because a parent, even if you were the parent that had to work and you had to work overtime to be able to pay for the services that your child needed, really that often happens is that one parent has to stay at home, the other parent really has to concentrate on their career to make the family work. Even if you're that working parent, you have still gone through the experience of parenting them. And ultimately, there's a thing about being a parent is that no one will love your child more than you will. For sure. And I think to defer that knowledge of, I've loved this person so much, I'm just going to defer my knowledge to mom's like, no, no, no, no, no, no, no, no, no. You have something important to say. And I think it's really the healthy thing is speaking to one another. So it's not who has more information or less information, but just speaking with one another and seeing where you're both at and what your perspectives are. And I think that will lead to helpful conclusions. So let's give both parents credit and recognizing that both parents have insights to their kids and also the fact that you do need to listen even non-verbally to your kiddos and understand what they want and where they're at. And that cloudy day, you have one protocol, a different kind of day. And cloud's just an analogy. It could be, hey, they woke up grouchy and grumpy. So well, this is the grouchy grumpy day protocol because we're probably not going to change that, at least not real quick. That grouchy protocol, don't think in days, think in hours. This is what we do for the next two hours. This is what we do for the next hour because it's easy to throw the baby out with the bath water and just recognizing how long the moment is. So you walk up grouchy, okay, need a couple of hours, give them a coffee, whatever the thing is that helps them wake up and then we can return to our normal schedule. That's really important because I think when you think about what's on the schedule for the day, that can be very fluid. And if they wake up grouchy and so you start maybe with a little different first couple activities, and then they start to warm up and they're happy and they're engaged, enthusiastic, then you can switch back to things that are maybe a little bit more challenging. And having the flexibility in your kids' program or the therapist that are working with your child to sort of roll with the punches, it seems obvious, but it's often hard to implement. And that's one of the things that we've tried to do at J13. And we aren't always successful, but it's part of our philosophy and what we try to do as a very individualized, not just to the individual, but almost to hour by hour, what's going on and what group works well together and all that stuff. But the last thing I wanted to end with, and I want your thinking about this, because I think you sort of share this belief. And it was a word that Tom, the founder of Howdy Homemade and Jeff, his partner, sort of talked about a couple of weeks ago on the podcast, it's yet, right? So your child can't climb yet. They can't communicate effectively with you yet. It's of course the sense for hope that there's never a reason to give up hope in spite of how difficult the behavior is, how little sleep mom and dad are getting because their son or daughter has just been horrendous. With the right therapy, the right programs that you've been able to implement and you've seen others implement, things will probably get better. It may take a while, but often things will improve. What final thoughts do you want to leave parents with when it comes to that yet and that idea of hope? Reminds me of there's a soccer manager in England and his team were playing really badly and losing a lot of games and the reporter said to him,"It can't get worse than this, can it? " And then he responded, "It can." There's an element of humor that you have to have that actually this situation can get worse. And the inverse is even more true that this can get better, nothing is forever. That one thing I've seen in my career is that the quality of services is exploding and the quality of technology and understanding of what we can do in certain situations is ever expanding. And just because the answer isn't here today doesn't mean that it won't be here tomorrow. And I think that that's something we can always rest on. And ultimately, this is so true in working with the adults at J13, is that there is a good life here. There's real opportunity for a good life. And sometimes I look at them, I'm like,"I'm a little bit jealous." You got to sort it out. You got buddies, you got interests, you get to do fun things, and it's like really just anchoring yourself to, I'm trying to build a good life for my child. And you know what? Often it does work out that way, that the child has a good life because I also have struggles in my life. We all do. You all have things difficult, but ultimately if you can help your child build a good life, regardless of any disability, I think you can rest well as a parent. Awesome. Well, Glenn, thank you so much for your time today. If people want to get ahold of you and find out more about your background and your BCBA experiences, where can they go? Yeah. So the simplest way to get into contact is my email, 512bcba@gmail.com, and I'm based here in Austin. So if you're an Austin family member, I'm providing services right now, so that's something that we could get in contact with. And then otherwise, Facebook is a great way to get in contact with me. And my name is spelled with two Ns, so G-L-E-N-N, Carter, C-A-R-T-E-R, and then you can find me on Facebook. I've red hair. I don't know how many other Glenn Carters there are on Facebook. Awesome. Well, Glen, thanks again and everybody watching. We hope you have a wonderful week and come on back next week for another episode here on Autism Labs. See ya.