[00:00:01] Speaker A: Welcome to Shining Inspiring Voices of Autism with show host Jennifer Dantzler. My name is Amelia and I have autism. Thank you for taking the time to learn more about the world of autism. If you enjoy what you hear today, don't forget to follow this podcast. Hey, everyone, this is Jennifer Dantzler, and I'm the executive director and founder of inspirend, a nonprofit whose mission is to create truly inclusive communities through education and engagement. The goal of this podcast is to shine a light on real people and their stories in hopes of inspiring others who are on this journey of autism. Either this, themselves, their child, their loved one, their co worker. I truly believe ignorance is not bliss, and we cannot be inclusive communities if we do not understand the people in the community. With autism now affecting 1 in 31 people, we need to get louder about this topic. We recognize that autism is a spectrum. There are a lot of people with a lot of different needs, a lot of resources available or none available. And we know that in every episode, we can't meet everyone's needs for their specific interest.
However, we hope that in each episode, you do gleam some kind of insight as to how you can help your child or yourself be a better advocate. And as we go through our podcasts, our goal really is to address the entire spectrum, the various needs, the various environments that we're going to be in. And we hope that there's something in every episode for each one of you. So let's get started.
[00:01:20] Speaker B: Welcome to a very special episode of Shining Through Inspiring Voices of Autism. I'm Mason Johnston, your guest host for today, and, yes, I have officially hijacked Ms. Jen's mic. Don't worry, it's for a good cause. Today we're flipping the script and putting in inspirend's fearless leader, Jennifer Dantler, in the hot seat. Why? Because it's Jennifer Dantzler Day and I've got questions. So who am I? I'm a freshman in high school. I'm not autistic, but I am a supporter of what inspirend does. I was greatly impacted by an inclusion program that Ms. Jen implemented in the elementary school that I attended. I talked about that program in great detail on the podcast. Episodes number 17. Go check that out, if you haven't already. So let's jump right in. How does it feel to be on the other side of the mic, Ms. Jen?
[00:01:56] Speaker A: Different. Interesting. Exciting. Yeah, I love it. I love it.
[00:01:59] Speaker B: Well, that's great to hear. So that's. Let's get started.
First question for you. How has your understanding of autism changed over Your career?
[00:02:05] Speaker A: I would say there's several different things for this question. The first one being when I was first in the field 30 years ago, we were taught that the main goal was to help a child get rid of their stimming or self stimulatory behavior. And stimming is really that repetitive behavior that some of our guys do, sometimes to calm themselves, sometimes to hype them up a little bit. And we were taught initially to try to help them get rid of that. Over the last three, three decades, what we've really learned is that there's a purpose to their stimming and it might be a calming mechanism, it might be a form of communication. It is just part of who they are. We work on trying to maybe reduce it or make it more functional when it's severely impacting them and their world around them. So if they're at work and they're having some kind of self stimulatory behavior that's preventing them from getting the job done, then we might try to work on how can we maybe defer that to later or transfer it into something a little bit more functional. So I would say the perspective on how we take stimming has really changed over my career. Definitely another one is what autism looks like in high functioning women. To this day, we're really just starting to learn about autism in high functioning women because women who are on the spectrum are still very affectionate, still have children, still hold very high paying jobs, and they've learned how to mask even more. And what we have learned over the last really five to ten years is that the assessments that are out there aren't even sense enough to pick up for high functioning women. And so the more I get to know women on the spectrum, it fascinates me because they have just worked really hard to try to figure out how to really mask, unfortunately. And so that's definitely an area of much interest for me right now. And then I think the last one, the biggest one, is that I think initially, I think as most people who are not trained, learn or taught communication is verbal words. And we know that there's nonverbal communication in how you sit, a facial expression you might give, but there's so much more communication. Our people with autism use to let us know how they're feeling in a situation, whether it's their body, whether it's the noises coming out of their mouth, whether it's they're trying to approach or escape a situation. And I think as a behavior analyst, I've very much learned over the years that communication is way more than words. And if we really want to understand our people with autism, we have to understand all of their forms of communication.
[00:04:35] Speaker B: What are some common mistakes that many adults will make when interacting with autistic adults?
[00:04:40] Speaker A: So often, for example, if we're taking someone who we call emerging verbal or nonverbal to a restaurant to, say, order a meal, and they might use an iPad to communicate or talk, but talk in a way that only familiar adults understand them, they go order the person behind the counter, maybe didn't understand them, and then they turn to the caregiver and start asking, what did they say? Or can you tell me what they said? Or they might just ask directly to the caregiver, what do they want? Versus just talking to the person directly with autism. And I think some of that, again, is out of good intention. They don't want to frustrate the person with autism. However, that's also not really giving them the dignity and respect that that person needs. And so I would say that if you are interacting with someone with autism, whether it's level one, two, or three, regardless of their verbal ability, talk to them directly, talk to them as a person. And then one of the other mistakes that goes in line with that is sometimes when you have an older, maybe adolescent or adult who may be developmentally young, like say five years old developmentally, we then tend to talk to them in like baby talk or little kid talk. But just because they might have intellectual disability and can't read above a kindergarten level doesn't mean they shouldn't be talked to as their age. And again, I think those are, they're well intentioned, but they are often, I, I think for our guys, it can be a little frustrating because it inadvertently makes them feel less than the other big one is eye contact. So what we have learned really over the last 20 to 30 years is that many people on the spectrum, not all, but many, don't have a hard time with direct eye contact. And that's for a multitude of reasons. And many people on the spectrum have been able to share a lot of those reasons. And so a lot of us assume if someone's not looking at us, they're not paying attention to us. But often that's what the person on autism, with autism or other neurodiversities need, is to look away so that they can focus on your words. And so we do a lot of that in our first responder training, where I think first responders are taught make eye contact, that is showing maybe a respect or compliance from the person they're interacting with. But for our clients, that's really hard to do. And so don't assume if you don't have eye contact that they're not listening and don't require the eye contact because that actually increases anxiety.
[00:06:51] Speaker B: What are some of the support gaps that can emerge as autistic children grow older? Particularly like here in Texas, where there are massively long waivers and wait lists you have to get on to get help once you reach adulthood?
[00:07:01] Speaker A: I am so happy you asked that question, Mason, because, yes, the easy answer is funding, funding, funding. As you mentioned, in the state of Texas, Once you turn 18, you're eligible for a Medicaid waiver program, which is different than Medicaid and it's for services for adults. The problem is There is a 16 to 22 year wait list to get that service. So unless as a parent, you signed your child up when they were two or three to get on the waitlist and you didn't learn about it until you were 17, their child was 17 or 18 years old, you now have another 20 years before you access this funding. And then the other problem, not only is the wait list the problem, but the rates for funding these programs are very, very, very poor. So as a result, there's not a lot of adult programming in the state of Texas for people on the spectrum because places can't afford to run quality programs because of the lack of funding. As our children become adults at the age of 22 is when they are officially done with public school. And we call that the cliff, because literally at 22, they fall off the cliff, meaning if their parents didn't get them on the waitlist at age 2, at 22, all services stop, all funding stops. And the parents say, now what? And what is my child supposed to do now? And then they say, okay, well, we'll go cash in our 401k so that my child can have services as a 22 year old. But there's not even a lot of programs out there because the funding is so poor. So the biggest challenge we have is funding. The other big challenge we have is a little bit more, I would say, around the area of ignorance, because 80% and some stats say 85% of people who are on the spectrum are either unemployed or underemployed. They're not out there getting meaningful jobs, which also means then they're sitting there not being contributing citizens of their community. The problem is ignorance. Not all employers understand how to interact or understand someone with autism. Many of our young adults will go into interviews and not pass the first interview. Maybe because of the eye contact or lack of it or the lack of handshake, or the interviewer might ask some questions that the person with autism doesn't know how to answer. There's a lot of what we call behavioral interviewing out there right now where an employer might ask a question like if you could have any animals legs, what would they be and why? And the person on the spectrum says why would you ask me that question? Because I can't have animals legs. Right? So guess what? They're not going to round two of interviews. So the challenge we have is we have very, very, very capable people who can be employed. It takes education of the employers to understand maybe how do we modify the interview process a little bit, how can we create reasonable accommodations in the workplace so that they can stay still to do the same job as everyone else? And so we have a real gap in employment for our individuals on the spectrum. So really funding and employment are our two biggest gaps.
[00:09:47] Speaker B: Our biggest hurdles we have to get over if we want to help get help and services and interaction with those with autism is to one, give to them and two, to help them give back to us.
[00:09:57] Speaker A: Exactly. It's a two way street. And our individuals with autism absolutely have the right to be and can be meaningful contributors to our society. We just have to give them the chance and it takes us getting rid of ignorance to do it.
[00:10:09] Speaker B: What do most parents or many parents get wrong? Not really from a lack of care, as may have been previously thought, but more from fear of doing something wrong or setting off a reaction like can happen very often with those with autism.
[00:10:22] Speaker A: You know, I think the hardest thing is futures planning. You know, when a parent gets the diagnosis of their child first, at hopefully two, three or four, sometimes a little later, they go through a little bit of a grieving process. And then it's very hard and scary to think about the future. And as their child gets older, it gets even scarier to think about what's going to happen to my child when I'm gone. All of us as parents think about that. But for our parents of our children with autism, especially our more affected children, they don't have the answer and it's really scary. So a lot of times they just want to ignore it and not deal with it because it's just too hard. It's just really too hard. And so one of the things that we try to do at inspirend is we do a lot of future planning type meetings where we bring in investment People and attorneys and people to really talk about what does this look like, not only financially but also like literally, you know, what are they gonna do? And many parents will often say to me they're living with me until they can't live with me anymore. And then I say, right, but then now, fast forward 40 years and now you've passed away and they have to make a huge adjustment to somewhere unfamiliar. Wouldn't it be better to make that adjustment earlier and get used to that environment, make sure it's the right environment and then let you age in place knowing that your child is in a good place, that's the right fit for them. So I think the futures planning part is really hard. The other thing that I think some of our parents make mistakes about is they're really focused on the academic goals and that's appropriate and definitely appropriate in the elementary years. We don't know. You know, it's very hard to say for a three year old what trajectory they're going to take. But then as they get older, if you maybe have a 12 year old who's still moderately or severely impacted and they're in the special needs classes, maybe, or maybe not going to college, we don't shift to more functional goals. We all say in school, like, I don't use any of the algebra or chemistry I learned in my life and I'm very successful. We all know there's things in school we learn that we don't really need. But for my guys, time is of the essence and we need to make sure what we're working on is functional because it takes longer sometimes for our guys to learn things. It takes more repetitive teaching, it takes generalizing it to multiple things, multitude of mediums and settings and environments. And that just takes more time. So really for our parents, it's about making sure that their goals are functional. And I always say begin with the end in mind. And I know it's hard, I know it's hard to say where's my child going to be in 10 years, but if we don't do that, then we get to 18 years old and we're not fully toilet trained and we can't take a shower by ourselves and we can't get in the car and put the seatbelt on by ourselves. Or maybe they're academically there, but they don't know how to navigate a college campus or call you if they're lost. And so really making sure that the skills are functional for wherever they're going to end up is really a priority of Mine, there is a book out there called Make It Meaningful that is wonderful by Peter Gerhardt and it's really hones in on how do we make some of those goals functional, very appropriate still to do in public school. So it's a really wonderful resource that I highly recommend to parents and educators to use.
[00:13:34] Speaker B: So just kind of a follow up to that first part of what you're saying about futures planning, would you say? Kind of in the past when ABA and Aussie autism care generally has been really focused on just the child, that it's kind of missed out on the, the parent child relationship that when a parent has a child that gets an autism diagnosis, they, they have to grapple with, well, my child may never be able to function fully, may not, may never be able to live independently. I may have to care for this child for the rest of my life.
[00:13:57] Speaker A: Early on in the world of ABA, before insurance mandates, we did parent training collectively as BCBAs, but it wasn't part of our DNA, if you will. Generally, in the world of ABA, once insurance mandates came in, it actually required that there be parent training in order to for them to approve the service. That was actually one of the better things that happened when insurance funding came into play because it's required. However, what's not taught in school or in the textbooks, as they say, is how a BCBA should sit down with a parent and have that really hard conversation about where do you see your child in five years? I hear you saying we have to save their 529 for college. I don't know that he's going to make it there because he's now 14 and still only on a third grade level or something along those lines. So it is very hard to have those conversations. And so as a result, I don't know that we have enough of them often enough and early on enough. Now that's also tricky because that then, as you said, goes into probably more than what we call our scope of competence for behavior analysts, where we're not psychologists, we're not social workers. So we will often recommend that parents maybe go talk to someone about how they're coping with the grief maybe or the loss. I remember a parent one time told me, well, their goal was to go retire on a golf course. I said, then great, then let's get your kid tolerating riding in a golf cart and enjoying the golf course, even if they won't ever get to play golf. But if, if their goal was to go retire to a golf course, then let's make that be One of the goals is that maybe they can go out and pick up the balls, maybe they just love the golf cart, maybe they can play golf, maybe they can just do the putting, maybe they can play the whole course. But let's, let's make that a goal.
[00:15:35] Speaker B: So you'd say a lot of futures planning can maybe not be more like this is where your child is and now your job as a parent is to help keep them there, help keep them stable. But more as you're a parent, you have goals in life. How about we make it to where your child can be there along with the ride with you, just like in any family.
[00:15:50] Speaker A: Exactly. And again, there are going to be some of our people on the spectrum that aren't going to be living at home, that are going to be doing their own thing. And it won't necessarily adjust the parents future. Right. But for our moderately and more profoundly affected guys, it does. You know, it changes retirement age from 65 to 75 because parents need to make more money so that they can fund therapies for their child. It kind of blows up their whole dream. And so part of our job is to help them walk through that and create a new dream that works.
[00:16:16] Speaker B: How has social media distorted or really changed the public understanding of autism in social media?
[00:16:22] Speaker A: Part of the challenges we're having is that a lot of what we call non research proven types of therapies or initiatives are being glamorized. And so if you get happen to have someone who creates a TikTok on the newest and greatest medication or therapy out there and it has a big trend and a big following, then parents will say I need to try that clearly because it's getting so much hype. The problem is our parents don't always know to still go back and do the research to say how many people has this worked with? What has been proven with this? Back early in my career I went with a child down to Disney World with the family and then they brought in someone from South America. We had to leave the child alone in the room with this person after came out and said, well, he's choosing not to talk. He can talk but he's choosing not to talk. And that just wasn't the case. Right. But these parents had seen something out there in the world to say, well I need to try this and I totally understand and I want all the parents listening to understand. I get that we have to try everything and we need to leave no stone unturned. The problem is sometimes we jump a little too quickly and we don't do our due diligence and sometimes it can be harmful for the child. I know there's been a lot of hype around stem cell replacement and they go to other countries to that. And I've had a couple parents where they've done it and it has harmed their child. I do understand the desperation. So that's one of the things is sort of the misconceptions about the newest, latest and greatest thing out there. The other one is there's obviously a lot of controversy over ABA or Applied Behavior Analysis, which is what I've done my whole career. And you know what I say to people is there's absolutely good ABA and bad aba, but there's also good neurologists and bad neurologists. There's good and bad of everyone in the medical field. There are good doctors and bad doctors. No one is saying get rid of neurology. They're just saying we need to keep neurology, but maybe we need to weed out the bad neurologists. It's the same thing in aba. ABA is a very proven, successful therapy, scientifically validated therapy. Yeah, there might be some bad ABA out there. And the problem is that some people are getting really loud about that and especially some of the people on the higher end of the spectrum are getting really loud about it because they've not understand the need for that kind of intensive service. Because part of the challenge with autism is perspective taking. They can't relate to that profoundly autistic child who really might need very structured services. So it's hard because I say it on almost everything I do. And like in the podcasts and trainings, ignorance is not bliss in our world and it can be detrimental. And then the last thing with that one where in the social media world is that the profoundly autistic are not represented equally. Because many of our parents of our profoundly autistic people are not about to get on social media and say, my child put his head through a wall last night, head banging and now we're at the hospital. No one wants to get on and say that, right? No one wants to get on and say I have to use a seatbelt lock in the car because if I don't, my child will unlock his seatbelt, get out of the moving car. The louder are the more high functioning people who can verbalize more. And our parents of our more impacted guys just aren't talking out of fear of judgment, for sure, out of fear of legal ramifications. Say a parent gets on social media, shows them with the black eye that their child might have done to them. Is child or adult protective services gonna be called by someone? We need to get louder on social media about those with profound autism. Only 6 to 11% of research going on now in the world of autism is around preferred profoundly autistic people. Yet a quarter of the autistic population is profoundly affected. So we're not doing enough research to find out what works and doesn't work. And so we need to get louder, to get more funding, to get more research and to, I'm almost going to say, normalize for our families of our profoundly autistic. Like, people have to understand what they're going through, but our parents are not going to readily say it out of fear of judgment.
[00:20:22] Speaker B: Going back to comments about aba, a lot of criticism I've heard about ABA is it's kind of like training a dog. Like, like if he does something you like, you throw him a bone. If you don't, you. You zap him with a, with electric collar or something, right? But when you, you look at that, you're like, that's really what you. ABA is kind of what you do with. At least that view of ABA is what you do with a lot of kids. Like, you got a, even a young kid who, who may be neurotypical, not, not neurodivergent. And then they do something that you don't want them to be doing, then you punish them, just like you would do with a dog, if you want to say it like that. So ABA really isn't. It isn't this training a dog type thing? It's really just doing more of what you do. Any kid, helping teach them, helping to teach them social norms and how to interact in a society.
[00:21:02] Speaker A: See, Mason, this is why you're sitting here as the host today. Because Applied Behavior Analysis, or aba, is about human behavior. It's not about autistic behavior. Right? And so if you are going to go train to run a marathon, you wouldn't go out on your first day and go run 17 miles. You would maybe walk or run a mile and then walk or run two miles and then walk or run three miles, right? That's called shaping of behavior. That's what we do in aba, right? We might need to do it slower and more repetitively for our people on the spectrum. But ABA is about human behavior. It's not about autistic behavior. The other example I always give is we all go to work to get a paycheck. Most of us, even as rewarding as our jobs, are we probably wouldn't continue doing them if we weren't getting a paycheck. That's our reinforcer, that is our token system. That is our delayed reinforcement two weeks later or twice a month. That's our reinforcement. So why wouldn't we apply that concept to our people on the spectrum where things are harder and they need that motivation to learn that new skill?
[00:22:00] Speaker B: Another part about social media is particularly how people with autism are depicted. Famously, you have, you have movies, most notably probably Rain man, which features a profoundly autistic man going and counting cards in Las Vegas. And then there's TV shows like the Good Doctor, which is about an autistic savant doctor who can memorize everything. But would you say that these depictions and others of autistic individuals have really harmed or really helped the autistic community?
[00:22:25] Speaker A: I think overall it's helped because what we need is noise. We need to get louder about autism. And I've said For the last 30 years, if autism is going to be, well, at the time it was 1 in 10,000, then it, you know, continues to increase, decrease, depending on how you say it, you know, And I think I used to say when, when autism was at 1 in 500. If it's 1 in 500, I hate to say it, but let it be the president, United States grandson, because that's the only way we're going to get louder and start to get noise. Autism Speaks was created because the CEO of NBC then had a grandson who was diagnosed with autism. And he had the wherewithal, he had the resources, the money, the knowing of the right people to start Autism Speaks. And look how big Autism Speaks has gotten. I think it's very important for us to get loud about this, get loud about it the right way, but it is pretty important thing to do.
[00:23:13] Speaker B: Yeah. So all press is good press, at least. At least most of it.
[00:23:16] Speaker A: Exactly. We just have to make some more noise.
[00:23:18] Speaker B: What questions do the public rarely ask or just people in general rarely ask to people with autism? To care caregivers, to autism advocates that they really should be asking to help increase communication and inclusion?
[00:23:29] Speaker A: How can I help? Autism is very isolating for our families and the community doesn't intend to do that. But our parents over time slowly start to retreat because it's easier. Right. They might have taken their four year old autistic son out to the block party, child had a meltdown because someone had a speaker playing too long or they had all kinds of food out there, but the child, you know, has diet restrictions. And so over Time the parent just says, I'll stay home while you go to the block party with the other kids. Or I'll stay home while you go trick or treating with the other kids. But at the block party, we could be asking the questions as the neighbors, what food restrictions? You know, we all could go a day without eating gluten. Like we, we could, we could all go a day without eating red dye. We, there's a lot of things we could go without for a day and it wouldn't kill us. And so when I remember back on your podcast, I think you or your mom referenced like, then you started doing that at Holy Trinity for the classroom parties is just asking those parents first, what food restrictions are there? We don't need to have it at the Valentine's Day party. And it's something as simple as how can I help? It might be in the grocery store. You see someone who has a 14 year old who's having a meltdown in an aisle, just saying, how can I help? Our parents don't want pity. They want grace. But they also don't mind the help if their child accidentally or intentionally, you know, makes a mess on a shelf. Go up and just say, you go walk with your child. I'll clean this up with no judgment and no explanation. Just, I got this. You go.
[00:24:54] Speaker B: So it's a lot of, A lot of interacting with people with autism. A lot of advocacy is putting aside assumptions and it's really about asking questions and getting to learn.
[00:25:02] Speaker A: Yes. And that parent might say, I don't need any help, but thank you. And they might not really want the help, or they might want the help and are still scared to ask for it. But we are not asking enough. How can I help? Can I come over? Would you be willing to train me so that I can stay home here for an evening and watch your child for two hours so you can actually go have date night.
[00:25:21] Speaker B: What gives you genuine optimism about the future of advocacy, about the future of care, about the future of, of May, maybe new technologies or discoveries that, that can help with the autism community.
[00:25:32] Speaker A: Wonderful question to end on. Okay, so one of the things I mentioned earlier was about profound autism and the lack of research. But there has actually now been a new federal appropriations that is mandating that there be more research in the world of profound autism. That's very exciting. We have a long way to go and it will be years and years of research before we. That research translates into funding. But it's a start. I'll take it. I would say overall awareness, we're seeing more sensory friendly nights at places. I actually literally just learned today that in Houston, there's a huge push. There's actually a collective of most of the performing arts companies in Houston, and they get together now and discuss how can we make not only like sensory friendly day at like the Lion King at the Hobby center, but how can we train all of our staff? So maybe if a child is not, or a young adult's not going to a sensory friendly day, but they're going to a regular play and they still have trouble. The staff there know how to help and support that. So there's more awareness coming, there's more initiatives starting. I still, unfortunately think we're a little late to the game with autism being 1 in 31, but, but the flywheel is turning, so I'm excited about that. You know, we're seeing a lot more things like calm down areas at, you know, sporting events and major event venues. So that's great. I know it's all very controversial and I have a lot of thoughts. And I did put out a podcast about what's going on right now, you know, in D.C. when it comes to RFK Jr. And the new autism committee that's been created and what's the cause of autism, very controversial. I won't go into a lot of that today, but I will say again, as we talked about earlier, I'm happy for the noise. I wish the noise was a little bit more methodical and deliberate because like when the day that RFK came on and Trump came on and said Tylenol caused autism, you had a lot of moms who went to bed crying that night because they said I gave my child autism. You know, I want it to be very intentional. But I am happy that we're finally getting a lot of discussion, you know, at the national level, because it's very much needed. The other thing that I'm, it's kind of a mixed emotion. But with the rates of autism being now 1 and 31, parents can now go places and see other kids that look like their child. It's still isolating, but it's not as isolating because there are more people out there with autism and so there is more awareness. Stigmas are still out there, but they're getting better. And so hopefully parents can start to access parent support groups, other people, to realize that they're not alone. That's my wish for all of our families, is that they're not alone, that they build that village of support. And it's getting a little bit easier again. We still have a long way to go, but it's getting a little bit easier each day.
[00:28:10] Speaker B: Taking every step we can to not only bring people thoughts into the community, but to build a community that will bring them in on their own.
[00:28:17] Speaker A: Absolutely. Very well said. At McAlpine Interests we believe strong communities grow when everyone has the opportunity to thrive. Based in the Lake Houston area, we specialize in community commercial, real estate, brokerage and property management across Greater Houston, helping businesses lease, buy and sell the spaces where they can succeed. We're proud to support, Inspire ND and their mission to increase awareness, understanding and inclusion for the neurodiverse community. Learn
[email protected] McAlpine interests looking after your best interests if you need help or resources, Whether you're a parent, someone on the spectrum, a business or a community organization who want to know more or need help or want to share resources, please reach out to
[email protected] thanks for joining us on Shining Through Inspiring Voices of Autism. If you enjoyed this episode, be sure to follow us, leave a review and share it with others who want to celebrate neurodiversity. Until next time, keep shining.
Sam.
