Tony Mantor: Why Not Me ? - John Brown: Bridging Autism Awareness and Transforming First Responder Training – A Father's Deeply Personal Advocacy Journey

Episode Date: July 10, 2024

Send us a text Ever wondered how to navigate the challenges of raising a child with autism? Join us for an eye-opening conversation with John Brown, the First Responder Program Manager for the Autism Society of America, and an autistic dad to Wyatt, his non-speaking 8-year-old son. John shares his heartfelt journey, from recognizing the early signs of autism to Wyatt's use of an AAC device for communication. We touch on Wyatt's unique sensory preferences, the hurdles with textures and lighting, and how these factors shape their family's dynamics, especially in co-parenting with John's ex-wife. John's personal anecdotes provide a raw and real perspective that any parent or caregiver can relate to. What happens when law enforcement encounters an autistic individual? John dives deep into the pressing need for autism awareness within the police force, EMTs, and firemen. Through his role, he has spearheaded the Autism Society of America's first responder training program, which educates officers on autism and effective de-escalation techniques. We recount a real-life incident where an autistic young man was mistakenly taken to a police precinct, shedding light on the gaps in understanding. Discover how this training program, developed with input from law enforcement, parents, and autism experts, is being customized for various communities and garnering positive feedback from officers eager to improve their interactions with autistic individuals. Patience and acceptance are more than virtues—they're necessities. We emphasize the importance of treating others as we wish to be treated, acknowledging that behaviors are temporary and should not define people. From understanding the emotional intensity experienced by autistic individuals to simply asking if someone needs assistance, small acts of compassion can make a significant difference. This episode is a powerful testament to the impact of empathy and education in creating a more inclusive society. Tune in and be inspired by John Brown's wisdom and dedication to fostering better understanding and support for the autism community. https://tonymantor.com https://Facebook.com/tonymantor https://instagram.com/tonymantor https://twitter.com/tonymantor https://youtube.com/tonymantormusic intro/outro music bed written by T. Wild Why Not Me the World music published by Mantor Music (BMI) The content on Why Not Me: Embracing Autism amd Mental Health Worldwide, including discussions on mental health, autism, and related topics, is provided for informational and entertainment purposes only. The views and opinions expressed by guests are their own and do not reflect those of the podcast, its hosts, or affiliates.Why Not Me is not a medical or mental health professional and does not endorse or verify the accuracy, efficacy, safety of any treatments, programs, or advice discussed.Listeners should consult qualified healthcare professionals, such as licensed therapists, psychologists, or physicians, before making decisions about mental health or autism- related care.Reliance on this podcast's contents is at the listener's own risk. Why Not Me is not liable for any outcomes, financial or otherwise, resulting from actions taken based on the information provided. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Welcome to Why Not Me The World Podcast, hosted by Tony Mayator. Broadcasting from Music City, USA, Nashville, Tennessee. Join us as our guests tell us their stories. Some will make your 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 Mayotaur. Welcome to Why Not Me the World. Today's guest is John Brown. He's the first responder program manager for Autism Society of America. But above and beyond that, he's also an autistic dad. So thanks for coming on.

I'm excited to do it. I've listened to, you know, I've been listening to some episodes. But yeah, I've really enjoyed the podcast. I'm happy to do it. and I'm excited. Yeah, thanks for asking us to do it. Oh, it's my pleasure. So if I understand it correctly, before you started working for the Autism Society of America, you're an autism dad. Yeah, so I have three kids. I have a 10-year-old and an 8-year-old and a 4-year-old. My 8-year-old son, Wyatt, he's on the spectrum. He's non-speaking. It has lots of challenges. And then before that, I was a teacher as well. I've worked as a gen ed teacher, also in special education, and was in the Air Force before that. Lots of jobs here and there between then. Okay. So how old is your son now? He's eight years old. Eight. So when was he first diagnosed? He was diagnosed early. So he was

diagnosed about two and a half. Actually, it was probably closer to two years old. We got real lucky. His mom and I, his mom was the speech therapist. I was working in special education. We started seeing signs because Wyatt, he actually had words at some point and then lost his language when he was about about a year and a half to two. He was speaking on par with that and stopped. And then we got lucky with a developmental pediatrician who was kind of starting his own practice and got a diagnosis real early. Well, that's good. So how's he doing now? Is he progressing better? What do you see for him in the next three to five years? Yeah, it's hard to know. He's smart. He picks up, he uses an AAC device. He uses an iPad to communicate. He's still kind of learning that. We're working

with speech therapists and his teachers and things to kind of develop his language. He definitely can express his wants and needs, especially when it comes to food. He picks up on that stuff real quickly, quicker than I do. It's there. It's just trying to get him out a little bit more. So in like four to five years, I mean, you know, I just want him to be able to express beyond his just immediate needs. I want him to start finding language and expression for himself.

And so that we can kind of pick up on like, what does he like to do? and he might not even know that yet either. So just kind of bringing out his personality is what I hope over the next four to five years. Does he sign at all? Because I know some autistic children will learn sign language to help the process. Does he do that at all or just the iPad? Very little. So, I mean, when he was younger, we sort of incorporated that.

Like when he was three, he used to sign a lot. And again, basic ones in need. It's funny, being his dad, you pick up on gestures and even the way he will take my hand. I know by the pressure he's using to hold my hand, if he wants to leave, like, leave the house, or if he's taking me to watch a video in his bed, or I can tell by the way he interacts with me. Like, it's kind of his own language. Does he have any issues with sound? I know I've heard that some don't like it real loud, and they can't be around it for long.

Right. Yeah, so he's interesting in the way that sound doesn't really bother him as much. It is bright lights. Oh, okay. lighting really really affects him quite a bit. So if we're in the car and being in Florida, you know, the sun coming in can really change his mood. And then, yeah, he's more focused on. He has a, he loves, his sensory needs really have to do with smell and sight, more than sound, I would say.

What about texture? I know some don't like textures of food or textures of clothing. Yeah, the food thing is definitely the textures of food. I mean, he eats probably six things. And he actually, he has started, that is one thing where he's kind of showing some growth. as in trying new foods. Good. And even if he doesn't like it, he'll, you know, spit it out or something.

But he's definitely trying more foods and things. But yeah, certain textures with foods. And it's, he does have a few stimming behaviors where he'll kind of scratch on a wall here or a book or he really likes pressure, like pushing his hands down on things and things like that. Okay. So how does he get along with the other kids that he has to live with in the house? Great. So that's, I mean, that's kind of an adventure all of its own.

is watching his siblings kind of interact and then asking questions and sort of just being open about what's going on because their lives are affected by it. Sure. Wyatt's mom and I divorced. And we co-parent and we're friends now. We divorced a few years ago. So we're one-on-one with the kids or have been, you know, I have to communicate to them. Like they wake him up at night or he wakes everyone up in the household at night, most nights.

And he, he has aggressive behaviors. And they're curious. starting to ask questions. So that's a big part of it is sort of kind of walking them through why it's journey to you and getting them comfortable and trying to, when me trying to explain what autism is to a four-year-old or a 10-year-old, it's, I don't know, it's all part of it. Well, I mean, imagine yourself a four-year-old or 10-year-old trying to figure out what autism is when adults can't. Right, right. But they pick up on it and it's, you know, I find that my oldest son, he's very empathetic and he's very, he wears his heart on his

leave. And a lot of the friends, he sits in the neighborhood and at school, they'll come over. I'm like, you know, your friend, and I'm familiar with their parents and things, but he'll have friends with autism. And he connects to kids like that, I think, without even knowing it sometimes. So does he have any major meltdowns, or is that an issue? Or is he fairly temperate that way? How does he handle that? Oh, yeah. Wyatt, he has pretty extremes. And it's late a day. You know, things affect him. We're not even sure half the time what it might be. I have noticed a trend like it's kind of seasonal. Like whenever Nolan's out around here, I think that really affects him pretty hardcore. I think part of it's communication, but he can definitely get aggressive towards himself. He has self-injurious

behaviors like head banging and such. And then with me and his siblings too, like, you know, it's a day-to-day situation. But yeah, he can show a lot of aggression. Yeah. Okay. So now you've done the special needs thing, where you've taught, you've got an autistic son. Is that what led you into the Autism Society of America? Yeah, it's a direct correlation. So before I joined the Autism Society of America, I had stopped teaching and joined a nonprofit here in Florida working with people of varying disabilities, helping with employment. And I had an incident with Y where he wandered and we had an interaction with police. And it was just really interesting. And I was just kind of searching and just kind of open to what was out there and I came across Autism Society of America and I don't know,

it was kind of kismet. Yeah. Now you brought up police. I had a person that I met and he had an autistic son and he was the most lovable, jolly walking down the street type person you'd want. He had to wind up going down to the police department to pick him up because he was walking around. He was so happy and he was probably like 20 years old at the time. They thought he was high. They took him. They didn't realize it was autistic. So they were. wound up, take him to take him down in the precinct. And then he had to go down and pick him up and explain to the officers that, hey, he's autistic and this is his way. He's not aggressive. He's laid back and happy. And that's it. He doesn't do drugs. He doesn't do any of that stuff.

And so how did you get into working with police to teach them what autism is about and how people react differently? Right. Yeah. So that was an initiative that Autism Society of America sort of pointed out as a need and it's a national need for sure just that bringing that awareness and acceptance through that avenue and you know we've that you know that and that's that's what I do I run our first responder training program and that's what we're doing we're sort of building a training program in different ways to to get the word out because you know law enforcement it's that's a crazy field these days I mean they wear a lot of hats and they're expected to know a lot of different things and So we kind of come out of it as an angle of like, listen, like, we recognize that we can't

expect law enforcement to be, to diagnose autism, but we kind of come out of like, there's a way to maybe second guess what's going on and have those conversations about, you know, when you see someone and not just going to drug use or something. Right. Yeah. When you took over, or when you started this program and you became part of it on working with first responders and autism. What was your initial setup? How did you set it up and get it working so that you actually had conversations and input and prom them about it? Yeah. That's a big part of it.

I've worked for autism society a little over a year. So I was, I joined in February of 2020. And so we do that in a few different ways. We have something called a safety task force. And this is about 50 to 60 people that are in law enforcement or former law enforcement, they're law enforcement trainers, its parents, affiliate leaders that we have in the Autism Society, subject matter experts. And so even before I got here and then when I got here, we were sort of running through the curriculum through this task force.

And so we got a lot of great feedback and we started putting together a course. And then we workshoped that course with different law enforcement agencies at conferences that involve law enforcement, this continuous feedback from that community, from the autism community to create something that I think that moving forward, we have a really solid foundation to sort of expand. And really, we're doing it for our affiliate network that spread throughout the country. And then, you know, where our affiliate networks don't meet, we want to work with agencies to reach them as well. Sort of just have a, you know, it's an autism-informed de-escalation course that, you know, we really want law enforcement's feedback on.

All right. So do you travel across the country talking to different precincts? How do you set that up so that you can expand on a greater part of the country, which definitely is needed? Sure. There's a little bit of that. So, you know, I do have discussions, a lot of virtual meetings. You know, that's the, that's the time that we live in. But a lot of virtual meetings and in speaking with chiefs around the country, you know, and considering the different law enforcement agencies that we have that are in rural settings, urban settings,

you know, diverse settings, like, and the different needs that they also have to address as well. So I go to, like, for instance, in June, I'm going to a co-responders conference in Nebraska to sort of hear from other people, but also sort of workshop our program as well. So we do, yeah,

we talk all across the country. and it's a little bit different everywhere. And I think that's, we're trying to, you know, create sort of a, you know, a gold standard with, with options for these different agencies that we can reach. Okay. Have you met any resistance at all? I mean, not to throw any shade at anybody. Have you met with any resistance to where people because they don't understand autism?

Because sometimes if you don't understand it, then it doesn't exist. Have you run into any situations like that or have they been pretty open-minded? Yeah, I'll be honest, Sony. It's mostly like people are open-minded. I have, I don't, I can't think of one instance that I've been in person and the questions weren't out of, you know, real true, like they want to learn. Or it's someone that's saying, oh, hey, you know, my uncle was diagnosed or like, we have a friend and their dad, or, you know, whatever it may be, they're making a connection to something they've heard or an experience they have in their own family. And they're, you know, I'm hearing a lot of the right questions being asked. So for the most part, it's been a real, it's been a positive experience, I would say. Yeah. Good. I can't remember here the other day I had someone I was talking with and I told him I was doing

autism podcast. They wanted to get more involved and how they could they help. And I said, oh, good. I hit the one and seven. Yeah. Right. And they said, one in seven. I said, yeah, one in seven people around the world either know someone to have somebody that's

autistic in their family. Yeah. If you can hit that one in seven where they might. not have anybody in their family, but they know someone, then at least you're expanding their knowledge because the biggest thing that I've seen in the last year, and I'm the biggest part of it, is when I first started this podcast, I knew absolutely nothing about autism. So I had to learn right along with everybody else is kind of listening. And I think that's the biggest thing that we have to do is get the understanding out there so that they don't just throw it to the wind that, oh, well,

this is what autism is, because a lot of times they confuse it with Down syndrome or other things when it's not something that you can visibly see a lot of times. Right, yeah. It's described as an invisible disability a lot of the time. And that's exactly right. And that's a great, I mean, what you're doing is great, because you are neuro learning and your audience is learning with you. So I think that's a great way to come about it.

And most people I talk to are just curious. Because if you've heard of autism and have no background in it, there's a lot of stereotypes to get thrown around about autism. But really it is so, it's just, it's a diverse, beautiful thing. And it's a real, it's a real community. Yeah. And it's worth, yeah, it's worth exploring. So many people that I've talked with that are autistic, they often say that's my superpower.

Yeah. And what people have to understand is that someone that's autistic, when they get up from classroom at school, they don't leave it at school. It comes home with them because that's what they are. Right. 100%. How do you go about teaching? the police officers, the EMTs, firemen.

How do you go about teaching them? Because lots of times someone that's autistic, they can have so many things that's going on, just like that person I was telling about that the police thought that he was high when he was just happy. The reverse of that can be if they're having a meltdown, they look psychotic and he's not.

And then they have to learn the difference between a tantrum and a meltdown. So how do you go about teaching that so that they can recognize it? Because in police situations, EMTs, lots of times, they have seconds to respond. Right. They have to make a decision based upon what they see. So what's your process on teaching them so that they can recognize and spot something

so that doesn't escalate into something that, you know, come out with a bad situation? Yeah, that's a great question. And it's a long answer. So a lot of what we do is we're trying to build, it's a program building. It's not just the training itself, but it's, you know, we interact with our affiliates. sometimes and the law enforcement agency through our affiliate. And so that's a community. So we want to basically join the autism community and the law enforcement community together.

And so a lot of that training is trying to get those two communities together so that we're talking about things like, you know, informed disclosure. If someone wants to disclose to a police department, that they have autism. So that when there's a 911 call or an incident occurs, there is some background info. It's just not a law enforcement officer. you're walking into a situation. And then in the training itself, one of the things we talk about is behaviors are not people.

Behaviors are temporary. So something like a mountdown, it is temporary. So we walk through a lot of different modes that someone can be in when they're anxious or when they're in crisis and what that can look like. So someone, for instance, that's very anxious or might be going into some sort of crisis could be utilizing some of a lot of stimming behaviors like rocking and pacing and jumping and flapping or they're wanting to escape from a situation or they're very distracted or they're seeking a quiet environment. So we just talk about those different modes that someone can be in and what

that can look like and then how to basically de-escalate a situation before it comes a crisis, before it becomes a crisis, or when they're in a crisis, de-escalating that back down to calm someone down. So it's sort of a, you know, we talk about a lot of de-escalation, autism-informed de-escalation techniques within the course. So within the course, we're recognizing some of those things, but really it's like a holistic view that we're trying to come at. We want to prevent these things from happening by opening that dialogue between the community and law enforcement.

And then when we train law enforcement, we're doing that in a way that giving them behaviors and stuff that they can recognize directly. It's not a perfect system, but we're just working to make it a perfect system. Sure. Okay, so have you had a situation where you went in, you trained some police officers, and then a week later, a month later, whatever the time frame may be, they called you up and they said, you know, this training worked because we had a success story? So we're in the very early process of doing direct training.

A lot of the stuff we've been doing is through conferences and overview and things. Now, we have a lot of affiliates that have trained across the country, and we have gotten that feedback. one of the very first things in the current training that we have is a father talking about an incident that occurred that could have gone to crisis if the officer had not been informed. So one of the very first things that we show an interview with a father and he's speaking about his son who took a walk in a neighborhood because it was a little, it was during a holiday, it was an unfamiliar neighborhood. Right. And an officer came upon him and he noticed some stemming behaviors. And the officer himself had spoken with the father. and said, you know, I had taken this class last week. And if I had not been in that class, I would have reacted to the situation completely differently.

Okay. So I have heard that feedback over and over. But like I said, you know, the training itself is just really one aspect of it. There's a lot of change that has to occur, I think, for safe interactions to occur in the autism community. I used to know, but I can't remember now how many police officers we've got throughout the country. So you take that, then you add in that 1% of the population in the country is autistic. Even though 1% doesn't sound like much, that's a great number of people.

Right. So you take the officers and then the amount of people that are autistic. If they haven't been trained or they don't understand, you know, it's getting that training out to all of them because that's something that is needed right across the country and around the world. Right, right. And we truly don't know the number of percentage of people with autism, honestly, because, I mean, let's look at, you know, it's one in 36 now. One in 36 kids have autism.

Right. Two years ago was one in 54 is what the CD reported. So more diagnosis, more knowledge, more acceptance, more awareness. Right. Honestly, everyone's on the spectrum quite a little bit. So, who knows? Well, you know, I interviewed a manager of a radio station in the upper part of England. He had a couple, three different autistic people that worked within that radio station.

And they used to bicker back and forth. And one would say, well, you know, he should understand. understand he's autistic and I'm autistic and he had to explain that yeah just because you're autistic and he's autistic doesn't mean that you're the same and then he made a statement he goes you know he goes he goes he goes I think we're all on the spectrum right but we as individuals have some of the same little tapping I talked with an autistic guy that does a lot of speaking and he says he ever tap your pencil so you're right I think you made a valid point there that we probably all have it built into us in some form yeah definitely I mean throughout this whole interview my leg's been shaking that's just

something I always do. And that's, you know, that's a comforting, stimming thing that I do for me. So, yeah, I think to an extent that's exactly accurate. Yeah. So where do you see this program in five years? Yeah, that's a great question. So I would like to see it, you know, right now we're, what we're doing right now is we're piloting with six of our affiliates around the country to sort of explore, you know, their different law enforcement agencies in six different cities throughout the country and kind of exploring like how can we, we have a, we have a course, developed, but how can we modify that for each community and sort of come out with a training program that can align to whatever community is being served? And so five years from now, I suspect I would like our program to sort of be the front runner, not only just in training autism-informed de-escalation.

So yeah, five years from now, you know, I see our program, you know, I explained that we're starting with sort of six law enforcement agencies and affiliates. I'd like to explain that obviously to our whole affiliate network. And that's what we're doing right now. We're building a training program that we're piloting out now to offer to, you know, our 70 affiliates across the country. And then beyond that, where our program doesn't reach or our affiliate network doesn't reach working with agencies outside of that. Yeah.

Okay. So now you're standing in front of a group of people, 100, 500,000, doesn't matter what number it is. What's the message you want to put to them? Some know about autism. Some are just learning about it. Some are just finding out their kids or grandkids are artistic. So you're talking with a group of people that's not really knowledgeable about autism.

What do you tell them? I think that's a great question. I think for me and just with the world we live in today, like if we could just all take a breath and be patient with each other, and really it's about the golden rule. just however you want to be treated, treat someone else. If you, you know, if you see me or, you know, or someone walking through the grocery store and their child or, you know, we talk about children with autism a lot, or or just an adult having a hard time, vocally having a hard time, physically having a hard time, whatever it may be.

It's okay to ask if that person, you know, needs assistance or to ask a question. really just having having patience and accepting people for who they are. Like I said earlier, you know, like I said earlier, you know, behaviors are not people. They're temporary. So really, you know, it's the golden rule. It's just treating everyone how you want to be treated. Because people with autism, even if they can't emote, the same sort of emotions or empathy that we can, they feel it. And sometimes more intensely than someone who's neuropical.

So it's all about patience and acceptance and being inclusive. Yeah, yeah, I think that's great. I've loved it. It's been a great conversation. I really appreciate you coming on. Yeah, of course. Man, it went by quick. Oh, yeah.

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