BCBA for Profound Autism Higher-Support Adults

This episode explores the often-overlooked transition from structured therapy to adulthood for individuals with high support needs in autism, emphasizing that success is less about continuing rigid interventions and more about adapting to real-world life. Glenn highlights the importance of moving from artificial rewards to natural motivators like connection, enjoyment, and shared experiences, while encouraging parents and professionals to focus on building relationships rather than enforcing compliance. He stresses the value of slowing down, reading behavior as communication, and tailoring approaches to each individual, since no single strategy works for everyone. Practical guidance includes documenting what has worked in the past, fostering peer relationships through inclusive community models like J13, and prioritizing enrichment and quality of life over simply reducing negative behaviors. Ultimately, the conversation underscores a flexible, honest problem-solving mindset—accepting what cannot be changed, collaborating across disciplines, and focusing on helping individuals live more meaningful, connected lives.

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Transcript

Mike Carr (00:05):

Well, welcome back everyone to another episode of Autism Labs. In the last two episodes, we talked to founder and a partner of Howdy Homemade, a series of ice cream stores that provide employment to special needs population. But for those of you that are listening that have a lower functioning, higher support adult, maybe someone that's level three autism or has other complex special needs, you probably watched some of those episodes and said, "I'm not sure that's my kiddo, right? I'm not sure they could really look at a howdy homemade." And I think they could. I think with the right supports they could. But today I have an interview with a real live BCBA, someone that's been in the trenches with the lower support folks and has all kinds of stories and experiences that I thought would be interesting for you to hear about. And then certainly at the end of the episode, if you have any questions for Glenn or for me, just DM us and we'll be happy to respond.

(00:49):

So with that, I want to introduce you to Glenn Carter. And Glenn, why don't you introduce yourself and tell us a little bit about your background and your experiences and then we can have a conversation.

Glenn Carter (00:56):

Although my legal name is Glenn Carter, actually professionally, I go as Mr. Glenn. That's how the people I work with refer to me. And so when I'm at work is that my name is Mr. Glenn. Yeah, Mike said I'm a BCBA. I started my career working at a school for children's autism in England. It was extremely well funded. There were some internal things that meant that the service that the kids got wasn't quite what I wanted. And then I actually met my wife teaching there and she said, "Why don't you come and live in America for a year?" "Sure, I'll come live in America. It seems like a fun place. "And that year began in 2009. And so I think it's maybe been the longest year ever. When I was here in Texas with her, she got my master's at University of Texas in developmental disabilities.

(01:39):

And then shortly after that, I did the coursework or the supervision requirements for my BCBA. And then shortly after that, I was actually really interested in the profile of students that what happens to them post therapy. So you start with these kids who are working 30 hours a week, they make great progress. And then there's kind of like this gray area where they still need some therapeutic help, but they don't need the intensity that was originally needed. And it's almost like a transition out of services to becoming more independent in the world. And so I opened a school out in Lakeway called the Magnolia School and it's still operating. Megan runs it. And if you have that profile of learner, I would definitely recommend reaching out. And then I left that school at the end of last year to really spend some more time with my family because I have two children through foster care and they kind of need my attention more than other kids needed attention.

(02:28):

I'm working with individuals and I've returned to working with adults and that has brought me a lot of joy. It's been really interesting seeing the full journey from doing early intervention to then doing elementary and middle school with individuals and now really spending time with adults and making changes to your practice based upon the population you're working with.

Mike Carr (02:46):

I think you brought up a couple things that everyone that's watching is interested in. So first of all, you've been doing this for a while.You aren't a newly minted BCBA. I mean, 15 plus years, you've got a master's in the field, so lots of boots on the ground experience, which does make a difference. And I think the other thing that you mentioned that's so interesting is I think a lot of parents perhaps have experienced this. When your kids are in school or when they're in intense BCBA therapy, they're getting the 20, 30 hours a week and they're having a very structured environment during the day, five days a week, things might be going pretty well. Or even if they're hiccups, the staff, the supports are in place. And then they either age out or therapy ends and things start going in the wrong direction. And our son did great in school and afterwards we were very concerned about what you just described, Glenn.

(03:32):

And so we took all kinds of steps to make sure that he still had all the supports and everything else that he needed to grow and continue to learn and not be isolated by himself and all these other things. But in your experience, the big gotchas or the big watch outs. That is, if you think about the things that you've learned working with so many different parents in different settings, if you can't afford or you don't have the capabilities or just the resources available to do everything that perhaps is needed as your therapy sort of ends, there are a few key things that you might recommend to parents, "Hey, be sure and continue to address this need or provide this kind of service or therapy." Does anything come to mind and do you have any stories to illustrate that?

Glenn Carter (04:08):

Yeah. So I think one of the big things is when you're referred to a child, naturally they haven't learned the life lessons that they should have learned or that typically children learn through the natural environment. So whatever reinforces or things that happen in the world, that child is not as responsive to those as other children are. And then when you come to do, especially when you're doing behavioral therapy, you might put some artificial reinforcements in. So we're going to earn 10 tokens and then we're going to get to go down the slide or whatever the thing is we're doing. And that is really important because for many kids, even just the relationship of, if I do this, then I do that or then I get that. That's something that needs to be explicitly taught when for other kids it's just natural that they just learn that without any explicit instruction.

(04:49):

So we have to build in these artificial reinforces to help a child navigate through their day and to be able to do all the things that are necessary for learning and development and things like that. I think that everywhere we might fall down is then you have to look at how do we remove those artificial reinforcement. So we go full circle to the things that happen naturally in the world are the things that are able to guide you through a good life. One of the things I've learned working at J13 is really it's thinking about, I'm working with an adult now, I don't have those tools to bring back out, or I could if it was necessary, but really those are kind of like the break glass and emergency tools. Yeah, we can bring all that stuff back, but really what I've got to look for as I'm trying to be an analyst is where are things happening in the natural environment or what are the things that are really powerful?

(05:34):

And it's interesting for some of the adults I work with, one of the big reinforcements I've seen is just a non-communicative speech. So making sounds back and forth, or if someone engages in scripting, actually just joining in the script with them. And it's like, what they're asking for right now is, "Hey buddy, can you give me some attention?" It's like, "Yeah, let's give you some attention." And it's almost changing your therapeutic hat from, "Hey, I'm trying to teach you something. So hey, these words have to have meaning. Oh, you need to say these words glarer or anything like that. " And now it's more, "Oh, we're just having fun together. All right, let's do this in the most fun way I can do it. You've said that sound, I'll say this sound." And really developing that back and forth with the kids. So the other part of your question of what can parents do?

(06:13):

I think one thing that I regularly interest in with the adults that I come across are what were the interventions that work best? So as someone receiving an adult, it's that, "Hey, if I could just get a two or three page document of these are the things that worked really well." And it could be when they were seven, we had real trouble with them getting dressed in the morning, we set this thing up and now getting dressed in the morning is something that they're greater. And then that as a professional gives me two things. One, if we have a relapse, I already know the intervention that lasts works, so let's return to that. And then the second part of that is it's put me in the ballpark of these are the types of things that work, these are the ideas or the strategies or the mechanisms that this adult's really responsive to, then it really helps for me to be like, "Okay, so in this scenario, this is how we're going to do it.

(06:56):

" And it makes a lot of sense.

Mike Carr (06:58):

So two things you mentioned that I think are, and I've observed this because you've worked with our son, Michael, who's now 36 and he's level three autism, nonverbal seizures, picho behavior, still wears an adult diaper when he sleeps at night, a variety of challenges. And one of the things that you do from a communication standpoint, the nonverbal communications is patience and slowing down. Michael's tempo sometimes is you just sit for five minutes and you make or a half hour. I've learned so much watching how you lean into, okay, well, Michael doesn't want to do something, let's find out why or let's give him some time to relax or reset. And then he comes back and he's more productive or he's more on than he would've been had you forced it through. So I find that exciting and something that I've learned from and amazing. And then the second part of that, which you also talked about, which is how everybody's so different, right?

(07:50):

You need to sort of learn each person and what the proper interventions are. And those interventions may change based upon the day they're having, the behavior they're exhibiting and everything else. But just because one intervention works for so- and-so doesn't necessarily mean that in that exact same setting, you might not want to use a totally different intervention. So I'd like you to sort of share a story or two maybe with J13. And for those of you that don't know who J13 or what J13 is, it's a nonprofit here in Austin that my wife and I and a couple other folks helped start for those that need the higher levels of supports that typically get kicked out of or don't qualify for a lot of the other programs that are available. We also though love to have folks with moderate support or low support because we've learned that by pairing someone that's lower support and maybe somewhat verbal or fully verbal with a big brother or a big sister like our son who's higher support, they can get things done together that neither one of them could accomplish independently.

(08:46):

So this hybrid arrangement where it's not just all low support, it's not just all high support is where J13's coming from. But

Glenn Carter (08:52):

Just your first point, there's an old paper from the 80s in the Journal of Applied Behavior Analysis called to Eat Too Many Donuts and Take Long Naps. And it really just describes the world for individuals with intellectual disability and how their world is so controlled. It's like, "You do this, you do this, you must do that. No, put that down." And they never get to experience those human things of, "I'm just a bit tired or I fancy eating three bags of chips because they taste great." And so with Michael, it's really, when you're saying about the rating of things, one of the things I find with Michael is that he doesn't have an ability to tell me how to speed up or slow down or take a break. And that's not something that I can foresee a low hanging fruit or, "Oh, I know how to teach you that.

(09:29):

" It's actually like, "Buddy, I actually don't know how to teach you that. But what I can do is be responsive to you. " And it's like, you're communicating in your behavior that you need to break. Sure, let's take a break. There's no drama here. And there's a thing we often talk about is that these are the things we must do in our routine. As long as we get those things done, we can do it at whatever pace you like. But then to go back to J13, so Michael's having a little bit of trouble with one of the other community members, and it really was that, again, going back to this attention, he was trying to get their attention and he was doing it in the sibling way of, "Let me just push your buttons because that is the best way to secure your attention." And then so with the two of them, the other community member, I felt bad for them because they kept on doing things that they shouldn't really do.

(10:11):

So they would say, "Hey, stop that. Don't do that. No, I've told you. " And it's that. So their day at the community, their ratio of being told they're doing well to being told they're doing wrong became way out of whack because just struggling through this relationship. Okay okay, okay, okay, let's reset. And so really thinking about how do we build a friendship between the two of them? Michael likes to make sounds like this, things like that. And then the other individual has some scripted phrases all around high fives and you're going down, buddy, and things like that. And he says them multiple times throughout the day, in fact, multiple times throughout an hour. And so really for the two of them, it's trying to teach how to do the other thing for the other person. So for the other person with Michael, I taught him how to make the sounds back and forth and then vice versa for Michael using his voice output system, teaching him how to say those phrases in response to that other person.

(11:01):

And when you're able to back off and it's just the two of them doing the thing, it's like, oh, here it is at that boys, you're really enjoying each other's company and all the things you can't measure like the smiles or the body language is like, oh, this is a true human enjoyment of each other's interactions and it doesn't matter what you're talking about. It doesn't matter what you're saying. This is you to a communicating that this is how you like to hang out with people. All right, let's teach you to hang out in that way. And it reminds me of the idea of a behavior analysis of culture. So that, I was first taught this by Sigrid Glenn, who's a professor out at the University of North Texas in Denton. And she just describes culture in this way where if two people are doing something together and then one of those people leaves and then a third person starts doing that thing with person B.

(11:46):

So now you have two people doing that same thing again. If person B also leaves and our fourth person joins and person three and person four are doing it, that is now the establishment of culture because the original two people weren't there, but it's something that we see carried across the community. And thinking about Michael and this other chap, it's like, that's really what I'm trying to achieve as a behavior analyst. It's like, it's not when I'm here, you do this thing perfectly. It's that, "Hey, I'm in a community setting, I'm trying to establish cultures. I'm trying to establish things that occur when I'm not here that are healthy for the community, and this is a lovely example of that. " Oh, there we go. This is a culture that's established. If you do it on the days that I'm not here, then we're rocking and rolling.

(12:21):

That's been really lovely to see. Just like, how do you develop the good things? And it's not all about how do you stop them hitting their head? How do you stop them waiting themselves? It's like, no, no, no. How can I give you something? How can I enrich your life? How can we make your life stronger? Because again, going back to Michael, there are some things, Mike has a prayer that he says before mealtimes, Lord, teach me terminity to accept the things I cannot change, the courage to change I think as I can and the wisdom to know the difference. And I think there is nothing more true than working with adults that there are some things we can't change. Michael probably is always going to have to use a diaper when he sleeps. It's unlikely that we're going to come up with an intervention that is helpful for that.

(12:56):

So there is an element of we do have to accept this is where they're at. And then the other part of it, it's like, oh, these were the other things I can change. This is how we can have a richer more fulfilling life. Let's really focus on those things because I think that leaves everyone feeling happier, parents, professionals, and obviously the client themselves.

Mike Carr (13:11):

I think your problem solving method is so interesting. And I'd like you to talk a little bit more about the mindset and the steps you go through. I've never seen anyone. And we've worked with a lot of BCBA's and ABAs and another therapist, and there's often a reticence to admit, "I don't know how to address that. I don't know how to solve that particular problem." And I think the reason that folks are hesitant to say that is they're worried that that suggests that they're not skilled enough or they didn't learn their certification properly or they don't want to admit defeat. Your attitude seems to be, it's not an admission of defeat, it's an opportunity to pivot that I can't solve that particular issue. I don't know how to solve that particular issue. That doesn't mean there's not a solution. There's not a different path. We might be able to achieve the same result or a different result or get us part of the way there or something that still works in most situations.

(14:03):

So let me think about what might work and then how to implement that and how to try that. I find that willingness to say, "Hey, we don't know how to go down this path. I don't think this path's going to work, but there are a couple other ways we might go. Let's think about that and let's try some things." Share with us, if you will, that mindset. And if you have any other examples of where you've used that successfully or maybe you haven't used that successfully, I think that would help parents and other listeners and viewers sort of understand how to address some of these tough challenges that they haven't been able to solve today. One

Glenn Carter (14:33):

One the things that when you're in school learning about behavioral analysis, you talk about the power of reinforcement and how reinforcement applies to all individuals for all behaviors. You can fix everything with reinforcement. If I can identify the accurate reinforcements, then we can shape behavior. And that holds largely true. That's in behavioral science, but this is applied behavioral science. This is the real world and the real world, there are tiers to what we can do. So the first thing is interventions that have a robust literature behind them. And so when you work with a child and you know you're doing something that has a strong and you've had good practice with it. So I know the intervention, I know how it works, I know the likely things where you might trip up, and these are the ways that you correct for those trip ups. And so for much of your practice, you really want to stay in that zone of these are the things that I know work really well, but the reality is that doesn't happen as often as you'd like.

(15:26):

And then we have this second tier of interventions, and these are more things that are emerging research. So this is kind of like the zeitgeist and when you go to conferences, these are the things that people are talking about right now. This is the things I'm working on. And so those are the things that keep your mind active and engaged. It's like, okay, I'm going to try that. I'm going to take this principle, see if that can work. And then the final tier is, this is a college try. I'm not sure if I'm doing this right, but we have this problem and so we had to give it a college try. And I think for all three of those tiers, kind of as you said, the ability to communicate that with the parents of like, "This is what we're doing, something that I feel very secure about.

(16:03):

We're doing something that I'm learning and I think this will really work well and these are the reasons I think it would work well." And then finally, "I'm really not sure what to do. This is where I'm going to start." And I think that when you have a robust research, you need less information. I kind of know what to do here, but when you don't know what to do, you need more information. And I found the more I say, "I don't know what to do, this is what I'm thinking." The more helpful insight I get from the parents or from the other people that are working with the client to be like, "Oh, okay, okay, okay. So we can try this. " And the other part is, especially that tier three, is really reaching out to other professions. So speaking to your speech therapist, your OT, referring back to the doctors that, "Hey, I've noticed that every time they're aggressive, they also have a fever.

(16:46):

I'm not sure that I'm the right person to solve this problem because it seems like the fever is bigger than the aggression. Can we go back to a doctor and really look at that journey?" Plus at the meantime, we still have aggression. So this is what we're going to do for the aggression and try our best to fix that. And I'm not sure that this is going to be our long-term solution and really working with other medical professionals and I guess even broader all the helping professions to see how can we come up with a solution that works best.

Mike Carr (17:09):

Well, that's super. And so what we're going to do here guys and listeners is we're going to stop for this week and continue with Glenn next week where we get into working with other professionals, maybe the impact of medications. I think there's some insights there, especially with our son who's on four different meds and some other things that Glenn has had experience with and successes with. So thank you so much for watching this week and come back next week for part two. Thank you so much.