Why Adults With Profound Autism Need Better ABA Services - with Mailande Vise

What happens when autistic children grow into autistic adults?

In this episode of Autism Labs, Mike Carr sits down with Mailande Vise, M.Ed., BCBA, an experienced behavior analyst with more than a decade of experience supporting autistic individuals across a wide range of ages and support needs.

Together they discuss one of the most pressing issues facing families today: the shortage of specialized programs and trained professionals for autistic teens and adults.

Mailande shares her firsthand experiences working with individuals with profound autism, including the challenges clinics face when supporting older learners with significant communication and behavioral needs. She also offers practical strategies for parents and caregivers, including identifying triggers, using visual supports, implementing environmental modifications, and creating proactive behavior plans.

The conversation explores the growing neurodiversity movement, the importance of communication systems, and innovative community-based programs that help autistic individuals build independence, vocational skills, and meaningful connections.

If you're a parent, caregiver, educator, therapist, or autism professional wondering what comes after early intervention, this episode provides valuable insights, practical tools, and reasons for hope.

Topics Covered:
• Adult autism services
• Profound autism support
• ABA therapy strategies
• Visual schedules and social stories
• Communication systems
• Behavioral support planning
• Neurodiversity acceptance
• Community integration
• Vocational training programs
• Autism transition planning

Guest:
Mailande Vise, BCBA

Connect with Mailande:
Email: mailande@viseabatherapy.com 

Phone: 601-291-0339

LinkedIn: https://www.linkedin.com/in/mailande-vise-3448a0110/

Autism Labs explores practical solutions, expert insights, and real-life experiences to help families navigate the journey of autism across the lifespan.

If you're interested in joining our private Facebook community for parents and caregivers seeking residential options, guidance and peer support for profoundly autistic adults or adults with complex needs - Click Here! 

Transcript

Mike Carr (00:05):

Well, welcome back everyone to another episode of Autism Labs. And this week we have another experienced BCBA who's got some interesting boots on the ground, lessons that I think will benefit all parents, journey, stories, all that kind of stuff. She also has a Master's of Education in Autism and Disabilities from the University of Texas, which is pretty cool. So the academic background is there and then the boots on the ground experience is there. Maitlin, is there anything else though that you'd like to share with the audience about your background before we get into some questions and some conversation?

Mailande Vise (00:39):

I think like a lot of people, I stumbled into the field after college. I had a bachelor's in psychology and I loved working with kids and I wanted to do something that would make an impact. And yeah, I just fell in love with it. I feel like the field has grown an incredible amount in the 10 years that I've been in it, which has been awesome. When I first started, people were blocking self-stimulatory behavior and really pushing eye contact and it is so cool how the field has changed and we're more neurodiverse affirming. So yeah, that's a little bit about me. I feel very privileged to be in this space. I feel like it's something I take very seriously and excited to keep making things better. I feel like we can continue changing what the field looks like. It makes it better, which I think is very inspiring.

Mike Carr (01:22):

And on that note of making things better, I mean, I think every parent has been challenged with an autistic child or a special needs child with complex IDDs, whatever it might be. But what we're going to try to do today is talk about your child's future can even be better than you ever imagined. There really is potential for excitement and fun and joy. And so challenges with clinics that lack specialized training for this population was one of the things that we had talked about briefly or that we said it was maybe a topic worth discussing. Do you have any stories, examples of things that, hey, you've seen there is a lack of specialized training for this population and the solution might be this or a solution that you've seen work well has been that?

Mailande Vise (02:07):

I have so many thoughts on this. I think the first one is that there is a ton of early intervention, which is super important absolutely. When your child's brain is super malleable, it's really important to get into services early. But I think that's really created a problem where it's a pretty lucrative field. These children are getting anywhere from 30 to 40 hours of therapy a week. Little kids are fun, right? They're cute and they're little and you can throw them around and they make progress super quickly because they're so little, which feels really rewarding. Because they're younger, they don't have as many challenging behaviors. And so there's just a ton of clinics that will accept learners up to 10 and then they discharge them. And I think that's a huge problem in that private equity has purchased so many big ABA companies and that maybe some companies have lost sight of their vision or don't think about the child once they grow up.

(03:03):

And so I think we need more adult programs. Fortunately, all of the clinics I've worked on, worked at haven't had age cutoffs, which is really important to me. I personally have a hard time with serving our population when they're young and cute, but what about when they grow up, when they get older? So I've worked at two clinics now that would have three-year-olds all the way up to 21-year-olds, but that also becomes really tough because I had one learner who was a teenager with profound autism. He didn't have a reliable way to communicate with his device vocally and he had learned that he could aggress to get his needs met or he could run and get his needs met. And so he actually had two clinicians working with him at once, which I've never seen a two-to-one approval, which was a really unique experience. And so on one hand, it was awesome that we were able to serve him, but on the other hand, it wasn't super appropriate when there's three-year-olds when he would have more intense, challenging behaviors, we would have to keep everyone in their rooms and it took four adults to manage it and it was really quite intense.

(04:12):

And so it just sort of tough because if there was a space that just specialized in adults, it would be more appropriate, the environment would be set up, there would be better training. So it's sort of tough. And ultimately this patient we had to discharge because we weren't set up for services, but then just it opens it up to, but then where can you refer them to? And that's happened at a couple different clinics that I've worked at where we start and we try, but then with the training and also in terms of burnout, what happens is you have four technicians that are trained to work with an older population and so there aren't enough people to cover their sessions. And so there's lots of room for improvement. We need to have more training, more clinicians and better designed spaces.

Mike Carr (05:00):

I think that's a super point. And one of the things that we've done with our nonprofit, John 13 here in Austin, Texas, is we cater to those that often have more challenges, not exclusively, because one of the things that we've found is if you have a profoundly autistic or a level three autistic older teen or young adult and you pair them with someone that's more of moderate support needs or low support needs, they can develop that big brother or big sister symbiosis relationship and the individual with the less support needs can often get the more profoundly autistic to do things that no clinician or no BCBA could ever get them to do.

Mailande Vise (05:39):

That's awesome.

Mike Carr (05:40):

But I think you're right. There is definitely a dearth of talent. We have found that folks that come to us with the right heart and the orientation to serving and helping, even if they don't have all the academic credentials, is on place to start. And then we have training programs and processes that we put in place to sort of help folks get to where they need so they can work with aggression and not encourage that and intervene in a way that's safe for everybody and doesn't freak out everyone else that's at the climbing gym or wherever we might be in the community. What would you suggest or what have you thought about that to solve the problem and to find not just more programs that are accessible but that are affordable, have you thought of or have you seen any other programs out there in Austin or elsewhere heard about, "Hey, they've got a unique model.

(06:33):

I think this is sort of interesting." Or they're doing something different than the norm that I thought is worth mentioning. Does anything like that come to mind?

Mailande Vise (06:40):

Yeah. So the first thing that comes to mind is actually Greenleaf. I think it's a collaboration with Easterseals and AISD, but that has been a really unique space. I think that ultimately there is a transition time because it is through AISD where it doesn't accept learners of every age, but it's lots of teenagers with a range of support needs from less to moderate. And it's really cool because I think it's run by one neurodiverse individual and the space just feels welcoming and cool. It's like all of the kids aren't everywhere and they have some social skills training or basic cooking training or they collaborate with different places in the community. They had, I could not figure out the hotel, but they had done a collaboration for vocational training with one of the hotels in downtown Austin and they would bus them every week. And so it was giving these teenagers real world experience.

(07:40):

There's such a cool space that I hadn't seen before. Everyone, all of the teenagers there are just so authentically themselves. And so it's nice to see a space where there's someone sort of perseverating on their special topic or stemming and it being okay and welcomed and yeah, that's a really cool space.

Mike Carr (08:01):

We actually have on our advisory board the couple that helped start Greenleaf. Oh, no

Mailande Vise (08:05):

Way.

Mike Carr (08:06):

We're familiar with Greenleaf and all the cool things that they're doing. One of the things you said though that I thought was so appropriate and a different mindset for some parents is how everyone at Greenleaf that you saw was sort of being their authentic selves. And I think that's an ongoing debate in the space. Autism isn't necessarily something that can be cured and in some cases, nor do you want it to be cured. So if it's a lower support individual who has communication skills, the fact that they're autistic can be their superpower

(08:41):

And they can actually then understand and communicate more effectively with those that are more severely autistic than someone that doesn't have a clue what they're thinking. And so I think being able to appreciate and create an environment where regardless of how quote autistic somebody is, they can still be their true selves and interact with people in an appropriate way. And if they do have bouts of aggression, hopefully you can anticipate those and mitigate the behavior while you're keeping everybody safe. So we've tried to do that at John 13 where certain people will be noisy like our son and other guys and gals will have to wear their headsets until we can calm them down a little bit or somebody might elope and want to run out every time they get a chance and so someone has to be just right there by the door. Have you seen other interventions or other techniques that work for those that are more profoundly autistic in a very effective way that still let them be the real person that they are, but at the same time mitigate aggression, keep them safe.

(09:54):

Does anything like that come to mind?

Mailande Vise (09:56):

I think the first thing that comes to mind is, you already touched base on it, but really knowing your child's triggers in those tough situations, right? Behavior doesn't come out of nowhere. It's predictable. So knowing, okay, loud noises are really stressful. Something's going to happen every time this happens. So you can warn them, you can incorporate visuals and you can give them the tools proactively and also recognizing what sort of that behavior cycle looks like. Typically they're sort of precursor or lower levels of behaviors that you see before the big thing. So can you jump in when you see that? Or especially with some learners, especially once a young man becomes from a kid to a man, he's stronger, aggression is a little bit more serious. And so you actually might want to reinforce those lower levels of behaviors to keep something from escalating. And so I might not push for like a harder way for them to communicate their needs if they're already in a tough spot.

(10:55):

I might accept them just pointing or something a little bit easier for them. So those are the first things that come to mind. I think of environmental modifications as well when we're able to. So one learner that I worked with, he was a little engineer and he loved watching things fall and we'd sort of like swipe things from the walls or climb on things. And so instead of creating a power struggle or unfortunately having some picture frames broken in the process, we just totally rearranged the environment. We took everything off the walls. We didn't have tables right by window so that they could climb up on it. And that was a really easy solution to keep everyone safe where we're not having to intervene with him all the time and he's able to be himself. Same with sometimes setting up the situation so that the door isn't just wide open, right?

(11:45):

Maybe your chair is sort of set up near the door to sort of slow your learner down a little bit or be available in case something happens. So I think it sort of takes some intentional pre-planning.

Mike Carr (11:56):

I think what you said about everyone's triggers is so important, right? That we've all probably heard the saying that if you've met one person with autism, you've met one person with autism because it's such a varied mix and what might set one person off might be something that another individual loves. And so being very proactive and training staff and the team and the clinicians that we have to know for each client or each learner, how do we get them to learn, right? How do we keep them happy? How do we keep them motivated? "Oh, this person needs to get up every five or 10 minutes and run around. Someone else might be able to sit at the table for half an hour." I think that is something that a lot of clinics, because they have to standardize because they're catering to more folks, they don't have the ratios, the staff to learn or ratios that they need is a big deal.

(12:44):

And then the environmental changes that you've mentioned, we take our folks out in the community every day and we know there's certain environments that are going to be noisy. We know there are other environments like outdoors this time of year, especially it might be warm. And so you just make obvious accommodations for people that are a little more sensitive to the heat while they're in the shade or they have more water with them or whatever it is or if they're in a noisy environment. When you think about what you've seen on the horizon and in terms of how you can address these triggers and make these environmental changes more effective and more universal, are there any reasons for hope based upon your personal experiences? Because we all know there's a shortage of trained staff and we all know how hard it is to accommodate all the needs the learner might have, but are there strategies that you've implemented yourself or you've seen others implement that, "Hey, here is something that's worked.

(13:34):

This is a reason for hope or this is something that I've heard about that's on the horizon that I think everyone watching or listening to this should be aware of.

Mailande Vise (13:40):

" I think of two things. I think the first thing that brings me a lot of hope is the movement for just neurodiversity. I love that there is less stigma of someone walking with their headphones or having sensory friendly times at movi theaters. I think that's huge because I think it sort of changes the landscape of what it could look like. And then the second thing that I think of is in terms of solutions that have been really effective. I think that social stories with visual aids has been really helpful with priming our learners before going someplace and then having really specific and clear reinforcement systems set up to provide reinforcement for maybe like walking with the group, sharing with people, keeping safe hands, whatever it is, and being really intentional to boost up that reinforcement in a way that's meaningful for the learner to really build all of those positive or pro- social behaviors, whatever you're looking for out in the community.

(14:42):

In terms of other things that are cutting edge, I haven't heard of necessarily different strategies. I think one thing that I've sort of learned with ABA is you're using the same skills over and over again and you're just individualizing it with your learner, visual aids, reinforcement, shaping, all of those things, task analyses. I feel like I've used those a thousand different times and they always work so well.

Mike Carr (15:07):

I think that's real important, right? That there's certain basic skills, there are certain basic processes, systems, approaches that have withstood the test of time across a full range of individuals. And going back to basics and not dismissing things that have worked might seem obvious, but to us one of the most important things is communications, right? Everyone has to have an ability as best they can to communicate. Our son's nonverbal. Well, how does he communicate? Well, he happens to have an iPad that's got a bunch of icons on it. He can flash through 10 pages of icons and create a sentence, "I want cake," or, "I want water." And he's gotten used to that through many years of practice and effort, but that is something that is so important and there are a variety of ways to do that. Spelling has become something that has recently resurfaced where if you give someone that you don't think has the ability to spell actually an opportunity to spell a word and all of a sudden they start spelling a word and they're like, "Oh my gosh, I didn't know that.

(16:08):

I didn't know they had that ability." So I think that's important. I think the other things that you talked about, visual schedules, giving them choices so they understand what's fixing to happen. If they don't understand language, at least they can see the pictures, they have some idea as to what's going to go on during their day and giving them those AB choices so that you're giving them two choices. You don't really care which one they pick, but they don't get the preferred activity until they do them both, all those kinds of things. But the thing you said that I thought was so important was about the changes you've seen with accepting neurodiverse individuals out in the community. And I don't want to misspeak for you. So Maylin, tell me if I'm off base here, but like we take our career, as I said, out in the community every day and crux climbing gyms is one place we love to go because they're so accepting of our guys and gals.

(16:56):

We've had members of the gym. One of the concerns you take people in the gym and while the gym members are going to complain because they're creating too much of a rockets or they're disruptive. Just the opposite's happened at Crux. We've actually had gym members change their workout schedules to when they know our crew's going to be there so they can volunteer to help when they're not climbing a wall. I mean, that's pretty cool, right? Not only are they accepting neurodivergent individuals and becoming used to and exposed to all those behaviors, but they're changing their program, their schedule to sort of help out. And then of course that helps our crew get used to surviving, not just surviving, but thriving in that type of environment. Have you seen any other environments like that? So I cited a climbing gym. Have you taken any of your learners or seen any other places where it's a great learning experience for them and that community tends to be very accepting of them?

Mailande Vise (17:47):

I think of one set of kids that I used to work with that sort of had their rotation of stores that their family would go to. I don't have one spot in mind, but I love that Crux is so welcoming. I also have, well, my husband has a membership at Cruc, so I love that they're a good community and a good space. I'd have to think about that more. I think one thing that I've run into is I'm going mostly based off of what parents have shared with communities like places in the community, just because unfortunately with a lot of sort of insurance requirements, it's pretty tough for me to get the opportunity to go into the community with my learners, but yeah.

Mike Carr (18:26):

Well, I think we're going to go ahead and stop at this point and come back next week as we continue talking to Malen Vice about all the experiences that she's had with learners, whether they're preschool, middle school or older, profoundly autistic or requiring less support. So please come back next week for part two of our conversation with a BCBA who also has a master's in education for those that have autism or disabilities. See ya.