Tony Mantor: Why Not Me the World

Lisa Kuntz: Transforming Autism Support – From University Role to Global Advocacy and Awareness Efforts

• Tony Mantor

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What if your curiosity led you to an unexpected career path that changes lives every day? 
Lisa Kuntz, the inspiring director of the Pierce Autism Center at Touro University, shares her remarkable journey into autism support and education with us. 
Starting with a chance role at the university, Lisa's commitment to understanding the unique challenges faced by autistic individuals has helped pave the way for improved insurance coverage and advocacy efforts. Y
et, despite these strides, she unveils the persistent barriers families encounter in securing timely assistance and highlights the critical gaps for those who age out of existing support systems.

Join us as we navigate through essential conversations on enhancing autism awareness across various sectors. 
We stress the importance of equipping first responders with the knowledge to handle high-pressure situations involving autistic individuals and share real-life examples of potential misunderstandings. 
The discussion also covers community initiatives, tackling sensitive topics like bullying and mental health, including suicide and the role of compassionate therapy in providing support. 
Finally, we expand our focus globally, examining shared experiences and unique challenges faced by families worldwide, and encourage listeners to participate in this ongoing dialogue to support the global autistic community.

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intro/outro music bed written by T. Wild
Why Not Me the World music published by Mantor Music (BMI)

Speaker 1:

Welcome to why Not Me, the World? Podcast, hosted by Tony Mantor, broadcasting from Music City, usa, nashville, tennessee. Join us as our guests tell us their stories. Some will make you laugh, some will make you cry. Their stories Some will make you laugh, some will make you cry. Real life people who will inspire and show that you are not alone in this world. Hopefully, you gain more awareness, acceptance and a better understanding for autism around the world. Hi, I'm Tony Mantor. Welcome to why Not Me the World. Today we have the pleasure of hosting Lisa Kuntz, director of the Pierce Autism Center at Toro University in Henderson, nevada. She will recount her personal journey from her early days at the university, with limited knowledge of autism, to her growth and development of significant relationships. We are delighted to have her on the show. Thanks for coming on.

Speaker 2:

Thank you very much.

Speaker 1:

Oh, it's my pleasure. How did your journey start into the autistic world working at the college?

Speaker 2:

Totally by chance, I started here at Toro University about 11 years ago and I was going to be the director of their health center. But the health center wasn't opened yet so they still had a couple of things to do and the build outs. So I said I'll just help out over here in the autism center. I like you. So I said I'll just help out over here in the autism center. I, like you, knew nothing about it and I was just fascinated by the children. And you know why were they walking on their tippy toes? Why do they hold their ears? Why? Just a bunch of whys, I learned.

Speaker 2:

All those kids are unique and different and special all at the same time, but they're just like everybody else in the community. They just need a little bit more help. So I've been doing that ever since that and I've seen so many great success stories, seeing some of the kids even graduate from our program and, you know, move on to high school. One of our children actually loves animation. She finished high school and she had a scholarship to move on to college so that she can pursue that dream of animation.

Speaker 1:

Wow, that's great. Once you got into this and started learning yourself, what path did you take? You're now working for a college that is all about teaching and learning about all the autistic traits. How did you interact and how did you expand that so that you could get to where you are today?

Speaker 2:

Wow, it was really learning from the BCBAs, learning from the RBTs, taking classes on my own, going out there and listening to the parents. I think that I learned a lot from the parents' journeys. I learned quickly that there was not a lot of in that time. The Paris Autism Center was one of the first centers in the Las Vegas area, so I learned that the resources there weren't a lot. I learned that their journey was full of paperwork and a lot of no's.

Speaker 1:

Yes, unfortunately so true.

Speaker 2:

So we started helping them, started learning about things and then at the time autism diagnosis wasn't covered by insurance. So we were one of the first places that got Sierra Health and Life to help us pay for the claims for these kids. That was a big plus. Then Medicaid started coming along. They paid, but now, as the years have gone on, a lot more of the insurance companies are recognizing it from a diagnosis standpoint. As long as you have that ASD diagnosis, more than likely they're going to pay something.

Speaker 1:

Yeah, that's great strides. One of the big things I continually hear is how long it takes to get diagnosed and get into the pipeline for any type of help that they can get. You are so right in the fact that the paperwork takes what seems like a lifetime for them, but meanwhile the parents have to deal with this because it's a daily thing for them. What do you see as the best pathway for them to expedite things and get some much needed help?

Speaker 2:

Right, right In Nevada or in the Las Vegas Henderson area, the pediatrician must assign them that diagnosis of ASD. From that point the insurance company kind of comes in and says well, all right, you've been diagnosed, but we need some more information. So you need to go out to that neuropsychologist and get a formal, more formal diagnosis. And that's what you're talking about, where it's taking years to do that. In that respect, here in our area we have centers that are popping up, so it's becoming more, I guess, where the community has more neuropsychs in it, so we're able to send our patients out. It's taking about probably six to eight months for them to be diagnosed and then, once they're diagnosed, we can go ahead and start our procedures of getting them into the clinic.

Speaker 1:

That makes total sense. Your clinic can do a variety of different things. Do you focus on any one thing or do you spread it out to try and help so many different people on different levels? What's your plan there?

Speaker 2:

So we practice focused ABA, and ABA is the only thing that we do here. So our clients are here for two hours. Our youngest is about 18 months. Our oldest at this time is about 15, but we will go up to the age of 18, or until you graduated from high school, to the age of 18, or until you graduated from high school.

Speaker 1:

Now, different states have age-out limits of 18 or 21. If it's 18 or 21, what's the process there for you? Because, as everyone well, if they don't know, autism is not something that's cured at any certain age. It's a lifelong thing. For the listeners that don't know, in certain states, at 18 or 21, they'll age out and can't get help. What do you do for those that are aging out yet they still need help.

Speaker 2:

Right, and that's a great question and it's a difficult question. They do age out. There are a few places around here that go a little bit higher, but unfortunately they're pretty much left on their own. You know they're going to face life doing their own thing right now. That's sad, and I think also what's sad is that right now a lot more people like older folks, are figuring out that they probably have autism but because of the timing, or in our generation or whatever generation they were in, it wasn't acceptable to be tested or you know, that was just that person in class that acted out.

Speaker 1:

I've heard that analogy so many times.

Speaker 2:

Absolutely. Nowadays, that person that's acting out gets help. They get tested, they get maybe assigned a diagnosis of ASD or whatever, and then they're able to get the help where we weren't. And nowadays I don't think that they can even be diagnosed. The older folks can be diagnosed to find out what they have and to get the help that they need.

Speaker 1:

Yes, it certainly has been tough for a lot of people, especially the older ones. I spoke with a lady. She was just about to turn 60. She had been diagnosed in her 40s late 40s. Then she said that by the time she figured things out she was always the weird one during high school, but when she figured it out her 50s she thrived and everything just turned around and her life was just so much better. I think because now we've got more information and we're starting to see this it's hopefully going to help those kids that are in the high school and and all that now have a better life because they can be diagnosed and they can get the help that they need. It's a total different life now in a span of less than 30 years.

Speaker 2:

Absolutely. When I started 11 years ago, it was one in 78, I think, and so now we're down to one in 36. So, yes, and I think you know it's also a career choice. Right People are be at rbt or you could be a bcba, where those types of jobs were never available, maybe back in the 80s right, right.

Speaker 1:

I remember speaking with a lady. She was a speech therapist for autistic children. She said that when she went to college for autism and what she was doing, she, she had one class, one semester, that was on autism and that was it. Now you fast forward, 30, 40 years later. You've got classes upon classes upon classes about autism and the needs that they have, that they didn't have and didn't talk about 30 or 40 years ago in college.

Speaker 2:

Absolutely. We are a university and we can tap in or they can tap into us as a resource for teaching their OT students, pt students. They can actually have them come down here and observe classes, you know, and observe a session and ask questions, and that's really great because you know you are going to encounter those folks.

Speaker 1:

Absolutely correct. They're all over the country, all over the world. We just need to learn how to understand what happens when they have different problems. For example, most people don't recognize the difference between a tantrum and a meltdown. How do you teach that? Because that is something that's very hard for anybody to tell, so how do you address that?

Speaker 2:

really a lot of difference if you don't know, except for maybe they're a little harder to settle down and to calm down, and I just think that they have to remember to look at the person as a whole and then maybe try to figure out what's going on with them as a tantrum or as anything that they're doing. I don't think that technically they would know the difference until they talk to their parents.

Speaker 1:

Right. I can't disagree there, because people are very quick to judge now. They don't realize that it's not bad parenting, that the parents are actually doing what's right for the child.

Speaker 2:

Yeah, For Autism Awareness Month we actually have a celebration and are able to have like a very large party, but the party is geared just to the family. There's no outside folks coming into that party, so it's just for everybody. That is at the center it's great because everybody there. If the kid is having a meltdown, if they're screaming at the top of their lungs, no one's judging them. It's like such a peaceful night for them because they're with folks that understand them. I think that's probably the best one, the best gifts we can give our parents.

Speaker 1:

Absolutely. I think that's just great. Parents need a parent's day out for sure. What is the situation that you had that when you looked at it, you thought it was going to be a complete disaster. Then, all of a sudden, after a little bit of time, things just worked out and it was a complete success.

Speaker 2:

That's a current situation we have. We have several children that are nonverbal and they have been working with the child. He now has a device like a PEC system that allows him to type in words like a picture equals a word, word and ask for things. Now, and it's great, he loves popcorn, and so he would just run into a room and try to grab the popcorn. Well, no, they were like no, no, back up, use your words. And his words are on a system and he would use them. But then there was one day he wanted that popcorn so badly that and he couldn't get it down on his device fast enough that he said popcorn. And we're all like, oh my gosh, what did you just say? And he's like popcorn, and that was phenomenal. What a day. That just goosebumps right now, actually. So yeah, that's amazing.

Speaker 1:

That's not the first time I've heard something along that line. That just goes to show the old saying that when you've seen one autistic person, you've seen one autistic person. When you see someone that's struggling, you don't think they stand a chance of doing something. And then they do, and then they do.

Speaker 2:

It's just a huge achievement and great goal for them. It is, it is and you just start to see him really start to flourish. It's been great. I mean, the computer devices that they have for these kids are amazing. It just gives them that sense of a little independence because they can ask for things on their own.

Speaker 1:

Yeah, that's just so good that they can feel independent like that. Now, did you do anything with the first responders? There is such a need to create that bridge between the autistic world and the first responders.

Speaker 2:

That's a great question. We actually just worked with the city of Henderson here and provided their Parks and rec department with tips and tricks for dealing with kids, with any behaviorals, but yeah, so we provided them with an hour and a half class and helped out, answered so many questions for them like how would you do this if they're yelling and screaming and dishing in line and all that other stuff. So they were. It was such an experience that they gained a lot of knowledge to help out during their sessions with those kids.

Speaker 1:

Yeah, that's great. We just need more of it. I think one of the biggest things we have to do is education, understanding. Those two things are so important when it comes to our first responders, because they only have seconds to think sometimes of what to do. They have to assess it and if it seems confrontational, if they seem aggressive, if they seem like they're going to hurt themselves, if the police don't know or the first responders don't know how to handle that, it can turn into a tragedy. We just need to find ways to get more information, more education, more understanding and then hopefully, after a period of time, things will just get better for everyone.

Speaker 2:

I totally agree with you. I think that we do need to get that out to them from an educational standpoint, and I wish there was some sort of identifier that we could say but you know, you can't make them always wear a t-shirt. This is, I have autism, Don't you know? Yeah, we have one kid that would probably go up and hug them To me that just you know, because he's not going to stop. They're going to tell you stop, stop, stop, and he's probably just going to be like oh my gosh, you're a policeman. I want to hug you, Thank you, and I would be so worried for him, so worried.

Speaker 1:

I can understand that. I had a parent that I was talking with. He had a very fun-loving autistic child, just loved everybody. He was so happy. The police saw him walking down the street. They thought he was high, so they handcuffed him and took him to the precinct. They then called his dad, who came down, explained the situation out to them. Luckily it turned out good. They released him. Everything was okay For everyone. That's like that. There's others that don't turn out that good. That's why we need the education and the understanding.

Speaker 2:

Yeah, that's probably the least of the policemen's thoughts at that time.

Speaker 1:

Yeah, and it's not the policemen's fault. They deal with, unfortunately, the seediest side of life Not all the time, so they have to look at things, that some things could turn dangerous in a blink of an eye, so they have to be on their guard at all times. Then, when you have someone that's autistic or has mental health, you don't know how they're going to react, because everyone reacts completely different. It's a tough situation for them.

Speaker 2:

Right, I agree with you.

Speaker 1:

Now that you've jumped into that arena, is this something that you're going to be putting on a schedule to do once a month or as often as you can, to bridge that gap?

Speaker 2:

Absolutely. So. It's part of their afternoon school where they're able to come in after school and then they're there until like six and then the parents are picking them up. So, yeah, we're going to be doing that probably every quarter.

Speaker 1:

Yeah, that's so good. Now you're doing ABA, you're bridging into the community. What other things do you do that people wouldn't be expecting of you to be doing because you are a university, because people don't look at universities as they would? Charities of helping the autistic community and those with special needs.

Speaker 2:

Yeah, that's a great question. I don't know, I guess, the answer to that. I think that what we provide, just as us and as humans, we provide empathy and understanding To us. They're not just a number understanding To us. They're not just a number. They're a kid who has strengths and differences and we just want to bring those out more so that they can make it in society today.

Speaker 1:

Yeah, I mean that's a great answer. People, especially today, need empathy, they need help, they need support, they need all those things. I think that's a great answer. People have to understand they get bullied, they're trying to fit in, they're just trying to do what everybody else wants to do and that's just live. Their life Puts a lot of stress on them because of those type of situations. Now here's another question. Unfortunately, when they get bullied and they get this kind of pressure, sometimes they go into that dark side and a lot of people don't realize this. But suicide is the second most leading cause of death among autistic people around the world. Do you address that at all in some of your studies? To help them for their future?

Speaker 2:

That is a really good question, because we offer what's called social skills group.

Speaker 1:

Okay.

Speaker 2:

And they do touch in that. That's a little bit of our older kids. That's like we have nine to about 14 year olds in that group and you're right, it wasn't at our forefront but it is that it's there now where we're starting to approach the subject of it and start to talk about it. So, yes, we're implementing it into our social skills group. We just kind of talk about it. We don't probably educate too much.

Speaker 1:

Well, talking about it is a start. It has to start someplace, because people have to understand and know, especially the autistic children, because females tend to mask more than when they don't fit in, they start going into a dark place. That's when tragedy can happen. So it's a good thing that you're at least talking about it.

Speaker 2:

Yes, exactly, I know that my whole staff is just really about compassion. So I know that we do have a couple people who are not contemplating that. But they do get to a space where it's like I don't understand. You know, here I have this. I'm different. You know, it's talk therapy. They talk it out with them, they help them out, they give them you know a lot of helpful hints. You know, I think that the kid is going to remember that.

Speaker 1:

Absolutely. It's a tough subject but it has to be done. You just brought up your staff. How many people are on your staff?

Speaker 2:

I have two BCBAs and three RBTs. We work about 10-hour days. Each of my staff members required to see eight people a day.

Speaker 1:

How many hours do you spend with each child that you see?

Speaker 2:

Two hours.

Speaker 1:

I'm curious have you seen where two hours just isn't enough?

Speaker 2:

sometimes I'm curious have you seen where two hours just isn't enough sometimes, absolutely, absolutely. I also think that if you're looking at the all day like a comprehensive, that might be a little too much. That's a long day.

Speaker 1:

Sure.

Speaker 2:

I mean, I think that two hours is great, which is something new for us. We only used to provide one hour. Two hours we're starting to see a lot more, especially on our younger kids. The younger kids are little sponges, but three hours is a bit much for them, so that's why we're like the two is great. But yes, it's recognized by a lot of our insurance companies up to 40 hours a week, so that's like a job for them.

Speaker 1:

Yeah, that's like the private ABA therapists that go out. Insurance will allow them, like you said, 26 to 40 hours to go into their home and help them out. So, yeah, it definitely is a job. Have you had any that you've worked with that? No matter what you tried, unfortunately it just didn't work.

Speaker 2:

Unfortunately.

Speaker 1:

yes, how do you approach that? I mean, you're trying to do everything you can do to help this child. For whatever reason, he or she is just not absorbing it or understanding what you're trying to put across. How do you handle it so that you can keep persisting and maybe break that wall down a little bit so eventually it can work?

Speaker 2:

Right, I think that's where you're having those parent meetings and you're making sure that those parents know. You know, like, here's some of our problem spots. We've been working on this. We're going to keep trying, you know, maybe tweaking their plans, and we'll help you find a different spot, maybe one that is an all-day establishment, or maybe one that comes in to their homes.

Speaker 1:

Yeah, that makes sense. Now you just brought something up that I think we need to touch upon, and that's the parents. Unfortunately, when an autistic child is involved, the parents stress out. They start pointing fingers, blaming each other, not getting along. The divorce rate is very high. Do you have instances where you have an autistic child they're bringing in for you to work with them? Do you find yourself working more to comfort the parents than you actually do for the child at times?

Speaker 2:

Yeah, yes, we do. We give therapy to the parents a lot, yes, but you know that's okay. We are actually kind of unique in what we do. Our facility is camera. We have cameras everywhere so we are able to give the parents an iPad and they can watch their child move throughout the center. So, kind of going back to the last question, those parents might already know hey, I see what you're going through every day, I understand. Also, during a parent meeting we can bring up specific snippets of a session and let them see that and maybe talk about why this isn't working or whatever.

Speaker 2:

I think that for the parents that's really neat. Also, we can download things on a thumb drive to show grandma and grandpa, you know. So they always have that Interesting case on that. We had a child. He just zoned out and so they thought he was having like a mini stroke or a seizure. We captured it on tape where he totally zoned out and he was probably zoned out for like seven to eight seconds. We were able to capture that and give it to the parent to give to the neurologist.

Speaker 1:

Wow, that's great.

Speaker 2:

Talk about, I mean one in a million, but that's just something that happened and was a good find and catch for us.

Speaker 1:

How did that turn out? Did it turn out okay? Is he okay?

Speaker 2:

Actually, he's going through testing right now.

Speaker 1:

Oh, that's good. That's great that you found it. Now we've covered a lot. Is there anything that you want to talk about your university that we haven't brought up yet that you think might be important for everybody to hear?

Speaker 2:

the child, just to provide a great atmosphere where they don't realize that they are learning, and then someday they just kind of notice hey, I'm doing things. So I think for us, I think it's just being compassionate, providing the best we could provide and making the parent, I guess, making the parent's journey a little less hectic.

Speaker 1:

I think that's great. Needless to say, it's a work in progress for everyone that's involved in this, so that's a great statement.

Speaker 2:

Yeah, they have a hard road.

Speaker 1:

Yeah, they do. I think it's like 70 to 90% of autistic people are either unemployed or underemployed, so it's tough.

Speaker 2:

Yes, yeah. Now I think what you do is amazing and you're very knowledgeable on it. For somebody that hasn't had to take that journey, I appreciate it.

Speaker 1:

I have learned everything that I know which isn't enough from everyone that's been on this podcast, so it's been just great having everybody on.

Speaker 2:

Do you find that when you are interviewing folks from other countries on autism, are our practices the same or are our practices different?

Speaker 1:

I find that most people have very similar stories. The difference is where they live. Similar stories. The difference is where they live, how the government handles it. When I hear people talking about their children, we still talk about being bullied. We still talk about ABA therapy. We talk about a lot of different things. So there's a lot of things in this world that are very similar, but the biggest difference, I think, is where they live and how they interact with their government and their insurances that they deal with. It's tough all around the world. It's a global thing and a lot of people don't realize that. Oh, wow, well, this has been a very interesting conversation. I've enjoyed it. I really appreciate you coming on.

Speaker 2:

Oh, thank you so much for having me. I appreciate everything that you're doing for the autistic community.

Speaker 1:

Thanks, I appreciate it. It's been my pleasure having you on. Thanks for taking the time out of your busy schedule to listen to our show today. We hope that you enjoyed it as much as we enjoyed bringing it to you. We hope that you enjoyed it as much as we enjoyed bringing it to you. If you know anyone that would like to tell us their story, send them to TonyMantorcom Contact then they can give us their information so one day they may be a guest on our show. One more thing we ask tell everyone everywhere about why Not Me, the world, the conversations we're having and the inspiration our guests give to everyone everywhere that you are not alone in this world.