[00:00:00] Speaker A: Welcome to Shining Through Inspired Voices of Autism with show host Jennifer Gensler.
[00:00:08] Speaker B: My name is Mandarin and I have autism.
[00:00:11] Speaker A: Thank you for taking the time to
[00:00:14] Speaker B: learn more about the world of autism. If you enjoy what you hear today, don't forget to subscribe to 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 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, sources 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.
Okay, listeners, we are in for such a great one today. I'm so, so, so excited to have a very, very special guest, my friend, Judith Ursity. Judith has so many accolades, achievements. First and foremost, she is mom to son Jack, and so we're going to talk about Jack in a minute. She was a founder of the Profound Autism alliance and so much more. So, Judith, thank you so much for being here.
[00:01:57] Speaker A: I'm so, so happy to be here.
[00:01:59] Speaker B: Yay. Thank you. Okay, let's get this started because I have so much to talk to you about. Okay, so let's start first with your personal story. Tell me about your. So Jack, how old he is, what his diagnosis is.
[00:02:10] Speaker A: Jack is 22, which it's not surprising that I say that's hard to believe. Seems like he was just, you know, a little nugget not that long ago.
He is a very handsome young man. You know, he's like 6ft tall, so bigger than me, very active person. He loves music. Lately, he's been listening a lot to Calvin Harris and Katy Perry and some Kanye, which sort of Cringy for me, but he's way cooler than I am, and he kind of keeps me up to date on what's going on in the world of music, just with his musical selections. He listens to those on his iPad. He was diagnosed with autism at 2. Our family really didn't know anything about autism at the time. He scored a 59 out of 60 on his childhood autism rating scale evaluation. So that just kind of is a reflection of where he was at the age of two. And so, you know, we've done everything we could as a family. First of all, to make sure he knows that he's loved and respected. We've also tried to do everything we can to empower him and make his life easier, have more connection, more fulfillment as a person, because he is a valuable person. We moved actually from my home state of Texas when he was 4 after he'd been diagnosed with an opportunity with my husband's job, just because we felt like he could get so much better services.
Moving to Massachusetts. And it was true. Like, it was like moving to a different planet when it came to just doctors that were available to see that had expertise in neurology and psychiatry and gastroenterology. The other things that come along, just being able to access one on one ABA therapy, we really struggled to get that in Texas at the time. There was so much focus on group therapy and inclusion and things that are beautiful for the right population, but there was just not for us, the opportunity to find individualized care for Jack and what he needed. So I feel like he kind of got started a little bit later with real applied behavior analysis. He learned how to point when he was 6. He learned how to say like, yes or no, which was so liberating for him as a person. Through the years, he's had so many victories and a lot of difficulty just with the different challenges that have come with his autism. Our team, the Shoba learning group, where he goes even to this day as an adult, has been focused on quality, individualized support, meeting Jack where he is, and they really provide multidisciplinary care. They do do. Of course, everything centered on ABA, quality ABA, but speech OTPT. And then when he was probably around 8, I told him too. Like, I feel like we forget with our kids that they really need physical activity. So I was like, 30 minutes of cardiovascular activity every day. So now fast forward. He's 22. He's in the adult program at Neshoba. I just dropped him off this morning. And they do amazing things going out into the Community. He has one on one support, which I think is a so exceptional for an adult day program for someone with profound autism. It's the only program I know of in Massachusetts that would take someone with Jack's high support profile, but they just continue to meet us where they are. He's received great help, but then at the end of the day, he's a dude who gets annoyed by his mom sometimes and who likes to listen to Cardi B. What can I say?
[00:05:36] Speaker B: I love it. I love it. You left Texas because of the lack of services. And I think that's really important, especially if we have legislators out there listening, parents who want to advocate. Because as we go to talk about what you've done with your career since you've moved, I want to inspire other parents who are here in Texas too, to try and do the same. Right. Because it's needed. It's desperately needed here in Texas and Texas. You lost a good one in Judith leaving. I mean, when you talk to Texas legislators and people down here, they're like, we're great. I was like, I don't know how great we are. Like, we lose some really good people. We lost another friend of ours that you and I both know who have twins, who moved to another state because of lack of services, who helped found feet. It's a shame. It's a real shame.
[00:06:20] Speaker A: It is. You really have to make tough decisions. My family is from Texas. Like, if any of you are familiar with Texas, there's a town called New Braunfels. And my family came over from Germany in 1840s, and they were one of the founding families of New Braunfels. There were like four or five families that founded New Braunfels. If you go to the Slyder on, like, think about me, because my family start at New Braunfels. My siblings are there. My mom's there now too. It would be so good to still be there just so we could have more interaction with our family. But we really struggled. Jack was diagnosed at 2, and we never could find an ABA program that would meet him at the level that he needed. And this was way back in 2006. Like, things have changed so much. And our school system, it's so interesting because I mentioned before he had scored a 59 out of 60 on his childhood autism rating scale. Our school system, when he went in at three to go into special education, they said they didn't think he had autism, which is just.
[00:07:21] Speaker B: Wow.
[00:07:21] Speaker A: Yeah, wow. It was so hard. Every place we turned, it felt like the door just slammed in. Our face. So, you know, we were struggling to get our school system to recognize he had autism and that he needed one on one support just because he had such high support needs. No concept of safety, no language, Couldn't say yes, yes or no, couldn't shake his head, couldn't gesture. But they just had this full inclusion model. And they just said, you know, he'll learn from his peers and there's, there's some teachers in there that can keep an eye on him. And I remember asking like, well, what happens if he wanders, you know, out of the classroom when someone's not looking and out the street? And the special education teacher that was in our IEP meeting, she'd been doing it for a really long time. And she, I believe, had the best of intentions, but she just said, you know, we'll put Vaseline on the doorknob so he doesn't do that. Which is. That's not a solution.
My husband and I were just looking at each other like, is this real life? You know, so.
[00:08:19] Speaker B: And that's so true. I mean, I have other horror stories too. And people will say, no, you're exaggerating. And I'll say, I promise you I'm not.
[00:08:26] Speaker A: And this was South Lake Carroll. We lived in South Lake, which is, you know, one of the top school districts in the state. But I will say at that time, their priority was academics and athletics. You know, we had this multimillion dollar football stadium that we lived like half a mile away from. It had sky boxes in it. The Dallas Cowboys would actually practice in our air conditioned practice field sometimes if there was something going on with theirs, that just the priorities were different, but we could not get an aid. You know, like, it was just so hard. So my husband had a job opportunity to move up to New England. And my husband is from Georgia. I'm from Texas. I grew up in a town, like I said. My family founded New Braunfels. I grew up in Seguin, which is right by New Braunfels. So small town, Texas farming community, all that. So now we're like talking about moving to Boston, which might have been, for me, like, you know, moving to Mars, you know, like, I didn't know anybody there, no family. But what we did know was that the services well ahead of where we were in Texas at the time. And we had fought in Texas. We were the third state to pass an autism insurance law. And so prior to moving, I had been very involved with that effort. And there were people who led that effort for many, many years. And then I came in just like the last year and we managed to get it through, which was incredible. So hope was sown, like the possibility was there. But this opportunity just came up and I remember talking to my husband in our living room and we had said, like, we're staying in Texas.
[00:10:04] Speaker B: We're.
[00:10:04] Speaker A: This is home for our kids. This is where we're going to be. But when this opportunity came, he's like, we have to go. And I remember him saying, like, this is just going to be a home run for Jack. You know, like, this is a home run for him. There was no hesitations, like, okay, you know, we're going. We've been here for almost 20 years now.
[00:10:21] Speaker B: Wow.
Time flies. I will say for, you know, our parents listening, especially parents of newly diagnosed that might live in Texas. What Judith just talked about as far as the autism bill, that really did help lay the groundwork here in Texas. And there are more providers now, they are more aware of what profound autism is and what's needed. There is a lot of one on one. And so while Judith, you weren't able to benefit from it, as with everything you do, many, many probably, well, thousands if not tens of thousands of parents have benefited from the work you did before you left here. So we are grateful for that. We're sad you're not here, but we are so excited because let's move into now talking about this profound autism. What is that diagnosis and why are we hearing it more now?
[00:11:07] Speaker A: The spectrum is defined in something called the dsm and there are criteria there that have been expanded through the years.
So now you have people who need a lot of support, can never be left alone, really rely on just that human being being there with them to make sure they're safe and they're happy and connected. And then you have other people who have real challenges, but they can go drive a car to work and they can have a job or they just have different, various sorts of challenges in their lives. But this is all under one umbrella called the autism spectrum. And so what's happened over is research that's meant to help support, developing meaningful services and supports for everyone on the spectrum has really skewed to those who are the type of autistic people who drive and who go to school and like in a. Without lots of one on one support and things like that. So different profile. And the reason really is I think, and I'm not a researcher, so this is total mom perspective. But common sense will tell you when you're like a researcher at a university or someplace and you're trying to do research, you have to do recruitment, you have to get people in your study. And that's not fun. I've witnessed that. My daughter Amy has done research in her educational approach and like she has had to go through recruiting trying to get people in her studies. And so I've seen that. And what happens is it's hard. So for those who are on the spectrum who are able to answer a survey or get on zoom and talk to, to someone you know and share kind of their experiences, that is definitely easier. Like it's easier to get people in. So over time that really changed what research looks like. So now and multiple studies have validated this only about it's between like 6% and 11% of clinical research now includes people who are autistic and who need lifetime 247 care, those people with profound autism. So only 6 to 11% of the studies include them. So that basically means we're not included. And if we're not included, which we haven't been over the last 10 years or so, now we're living the reality of not having research out there to help us. So when we run into challenges like self injury or wandering or other co occurring conditions like epilepsy that comes with profound autism, or we're just trying to figure out how to design behavioral programs that are going to go on forever. You know, like it's not just a model that's for a period of time, but this is a lifetime support needs thing. Those things aren't happening because they're not funded through research. And a lot of people are like, oh, I just want services and supports. I don't care about research. If you don't have research then you don't build the models or the correct models at least. Yeah. So what we've seen in our community is people just becoming isolated and our worlds are becoming smaller and smaller and smaller as our loved ones with profound autism just get bigger and bigger. We experience that, that as a family. My son Jack went through horrific self injury, started about three or four years ago, kind of came out of nowhere. And we turned to the doctors that are experts here, like at Mass General, Boston Children's, you know, just the best of the best. They're all like trained at Harvard. And we turned to our behavioral system who also they provide one on one care. And we pulled in experts on self injury from every leading, you know, VA entity. Like because I know lots of people just because of advocacy and things that I've done through the years, there were no Solutions, like, and we were. Jack was literally hospitalized. He had to have surgery. Like, he almost bled out one night when I was traveling. Like, there was this. We were turning into this life or death scenario. We decided to start focusing on this part of the population, Those who need lifetime 24. 7 care, and really focusing on trying to establish a definition which would be clear so it could be research and people would be motivated to research it. And then we also wanted to make sure that people are trained to support this population because it's different and it's challenging at times. And so our family, like, we just sat on the couch and we're like, okay, we're co founding the Found Autism Alliance. It was me, my husband Andy, my daughter Amy, who's in medical school now, and my son Jack. He's our chief inspiration officer. He is a part of Love everything we do. And it's been three years now since we started Profound Autism alliance. And I could not have dreamed about how the community kind of met us, or we just kind of met a need at the right time. And it's been so beautiful to see.
[00:16:02] Speaker B: It has. It really has. And, you know, you mentioned the 6% in research, but about a quarter of the population, it would fall under this definition, right?
[00:16:12] Speaker A: Yes, that's right. So it's 26.7%, according to the CDC. And, you know, it's probably a little more than that, but we just need more research to clarify that. So, you know, moving ahead right now, like, I actually fly to Washington on Wednesdays. I'm flying to Washington this Wednesday, and I talked to members of Congress about how we can do that, getting language and appropriations bills and things like that to push to have this terminology recognized and then researched. And we're really. We're making progress in that regard. It's so exciting.
[00:16:47] Speaker B: That is incredible. And I want to have the listeners hear that again. You're a mom who is a profoundly autistic adult. You have now founded this profound Autism alliance, and you fly to D.C. on Wednesdays to make sure there's a presence and a voice for the profoundly autistic. And I just think that's incredible. And you're sitting here on this podcast with me. I can't believe it.
[00:17:09] Speaker A: Well, like, you're one of my people, so of course. And I will say that might sound like, oh, my God, you know, like, you must have some great situation where you can do that or whatever. Yes. I mean, my daughter's out of the house now, so it's just me, my husband, and Jack. Jack is going to an adult program, which is great. So we do have a good situation in that there's juggling, of course, so that I can do this. And I'll also see, too, at Profound Autism alliance, we're not trying to do a bunch of different things. Like, we really focus on making sure that people in Washington and in the states understand what profound autism is, because they don't. They really don't. And so we're educating them about that. And the only way to do that is to be there. And we have achieved things. Like, we have actually succeeded in getting federal legislation passed that includes our population.
It's so exciting to see we've made great inroads. So that is working. But I get up early on Wednesdays. I fly there a lot of times. I'll fly back on Wednesday night. I live in Boston, so flying from Boston to Washington is about an hour flight. If I plan ahead. Like, it's not super, super expensive. It's a really long day. Sometimes because I'm old, I do choose to spend the night and just come back the next day just to make it easier on myself. But it's just an area of focus where we're there and we know the staff. We've been doing this now for three years. And now what happens is, rather than me reaching out to the staff about things in the Senate leadership and in the House leadership, they reach out to us and they say we're seeing this. Like, what do you think? Which is so cool. And it's really just because we're regulars. We're there, we're credible. They know that, you know, we're not going to run around and do things that are toxic. We're all about progress.
And so building those relationships. It's something I learned in doing state advocacy that works. And so now doing it on the federal level. Laura Unum, who I worked for for many years at Autism Speaks and then at Casp, said, you know, like, Washington is really just like any other state capitol. It really is. There's the House, there's the Senate, there's the executive. And she's totally right. It is. So for me, it's been very rewarding to see us succeed. And getting into offices is. When we started, we were just meeting with, like, the lowest of the low staff people. Like, it felt like, like the high school interns that were there. And now every time we go, it's the senior legislative aides that want to meet with us. So we've really just established ourselves in helping people understand profound autism. And when people understand it, that's when we can make changes in how research is funded and how services and supports are funded. It's a lot. The progress is just incredible. When we first started doing this, I remember walking the halls and there were some offices who wouldn't even talk to us. They're like, just send us your information. Like, we don't have time for this. But we just stayed positive, kept coming back. And I remember walking the halls in D.C. and thinking, is this even working? Like, is this a good idea? Because you just felt so, like I'm nobody, I don't have a lobbyist, you know. But over time I learned as I really did get to meet with people and the word spread like it has been worth it.
[00:20:22] Speaker B: So. Absolutely.
[00:20:23] Speaker A: Yeah.
[00:20:24] Speaker B: Well. And I think it, as you've said, it's so important because I think especially for our families with profound autism, there's so much that's not said because parents are in fear of judgment. Parents are in feel of CPS or APS being called. And I think a lot of what you're doing, if you go onto any of your social media platforms and it's real stories, it's real people out there and our people in Washington need to know and hear those stories. Yeah. Yes. Some people have to have a zipper tent around their kids bed that they lock at night because if not, the alternative is worse. Some people have to put seat belt locks on their seat belts for their children because if not they'll get out and try to get out of a moving car.
[00:21:02] Speaker A: That's exactly right. I had a cool experience recently with an aide in one of the Senate offices, one of the leading Senate offices. I won't say which one, but she is an autistic self advocate and she's a legislative aide. And I had met with her a couple times and she was cordial and nice and everything, but very again, against segregating the autism spectrum. She just wanted to be called autism. She felt like everybody had their own challenges. So she really did not like the term profound autism. She was nice about it, but she was firm about it. Like she really did not want that language specifically used. She wanted us just to describe it in different ways. And so it was a challenge. But this last, I think it was September or October. Jack was in between aging out of his school program and starting his adult program. So I took him with me.
[00:21:51] Speaker B: Wow.
[00:21:52] Speaker A: Washington Wednesday, which it's a short flight. Like, you know, we. I for with Jack, I've learned like sometimes things go horribly and like you could really throw your hands up and just quit. But then other times they work out and you're like, wow, okay. I really wanted him to meet some of the people who I had gotten to know in Washington. So one of the people we met with was this self advocate, because I wanted self advocate to self advocate to, to meet and just sit across from each other. And so JAG sat at the conference table with her, talked. It was during a shutdown. So like it's interesting, people think like, oh, don't go to Washington during a shutdown. It's actually a great time because nobody's in a hurry. So we met for like an hour and Jack listening to music, like she was engaging with Jack, trying, you know, he doesn't really have conversations, but she was really focusing on connecting with him, which was cool. But we talked and when we left and it wasn't just because of this meeting, but I think it helped contribute. She told me that she had changed her mind about profound autism, about the terminology that she now really thought it made sense to have just a term. Moments like that for me are they feel like they're out of the movies or something. I'm like, wow, Jack didn't say a word during that meeting. He was there just representing self advocating with his presence and it made such a difference. So, you know, I hope to do more of that with him as he can do it. He just certainly can't do it every Wednesday, but.
[00:23:19] Speaker B: Right, absolutely. But he was literally the chief inspiration officer on that day. He held his time.
[00:23:25] Speaker A: Not like some propped up term, like he really. He inspires everything we do with his coolness.
[00:23:31] Speaker B: Yes, yes. So with this profound autism advocacy and awareness push, part of what we're trying to do is get funding that's more realistic. Right. Because as you mentioned, especially in the world of insurance based aba, parents live in these six month hills for auths. And if you get three to four to five to even seven years of aba, you're lucky. But our guys need it for life. Right, so that's part of what you're trying to advocate for, is funding that makes sense for life.
[00:24:01] Speaker A: Yeah, absolutely. And what that needs is specific research for that population. So we need to do research in the applied behavior analysis world. We need to do it in the broader just biological research that occurs to show what kind of support is needed, what that looks like, because it is, is what we call like non transitory. It's not intermittent, it's lifetime. And so that model has to be built, it has to be funded. So you need to understand what that looks like. Over the last few decades, of course, so much has been focusing on early intervention and then it's grown to further out of that because we know, you know, for many it's not just about early intervention. I would say most, you know, like it's, it's more than that to this model that really serves people with a different sort of presentation who, they have autism, but they cannot be left alone. You know, they may not be reading or writing, they may have challenging behaviors, they may have self injury. I used to say it was just like really big autism, you know, that never fades away. With the right kind of support, they can be part of the community. They can be flying to D.C. and meeting with a legislator, or they can go to the grocery store or go out to eat or just they can even stay at home with their families rather than having to be placed in a more, you know, institutional type setting or more restrictive setting. Although many times that needs to happen. You know, there needs to be those options creating the research that really isolates this population and gives us more techniques than exist now. It's really needed and that's our focus.
The other piece too, and I literally, about a month ago just sat down at my computer and again, inspired by the great Laura Unum who did this with her insurance law in South Carolina. She just wrote a bill will and I wrote a Medicaid waiver for people with profound autism because we really need like a specific waiver that says, you know, this is not someone with just intellectual disability. And I shouldn't say just, I don't say that in a way that minimizes that. But a lot of times people with autism and all the combinations, like the need for a lifetime 247 care, most of them have intellectual disability. They kind of get equated to people who only have an intellectual disability diagnosis. And those are different populations. So you need different service models. I wrote a model waiver, you know, that I'm trying to figure out, like where I'm going to introduce it first. We have a profound advocacy network where people are trained with. I have a series of state advocacy trainings that they have to go through and then we talk about what they can accomplish in their states.
So I think this is more of what you're going to see in the coming years is where we've been focusing on research and awareness, which we'll always do, that has to evolve into actual services, whether it's through insurance, through a Medicaid waiver.
You know, eventually I don't Know if we need to try to figure out what can happen in the world of education, because right now it's just a disaster.
Just those things specific to our population.
[00:27:06] Speaker B: Well, and I know one of the initiatives that I know I was a part of here in Texas is we're trying to get profound Autism Day, March 17, in every state, really, that is just to start bringing that awareness and education to that. One of the things I learned this year is that the. There's a proclamation, but that's different than a bill. Right. And so the proclamation is just for that one day, that one year, but your legislator, your representative has to go and advocate for it to be a bill.
[00:27:32] Speaker A: That's right. And bills are stronger. Takes a little bit more effort. We love the proclamations because it just normalizes use of that term, takes away the stigma. We don't think it should be stigmatizing. It really is just a form of clarity about someone who has a different kind of autism. And that does not make them less. It doesn't mean they don't have potential or we're not going to provide them services. It's just a point of clarity, is the way we look at it. So, you know, if we got proclamations in all 50 states, it means that definition has been proclaimed in all 50 states across the country. And then it also could be done at the national level, which I'm definitely working on that federally as well. This ongoing effort. Yes. Having a bill where it's just normalized as a yearly thing that. That more and more legislators get involved with, then that just grows and that turns into events and places and experiences for our population that we haven't had before. And it's not meant to take away from other days like Developmental Disabilities Day or Autism Month. Like, those things are all important, too. We love those. But we really need to have our own day where people understand what profound autism is and they just hear the definition and they have an understanding of it. Texas led the way last year and getting a proclamation. We had 15 states in total.
[00:28:53] Speaker B: It got passed as a bill in Texas.
[00:28:55] Speaker A: That's amazing.
So you're way ahead of everybody. So this year, we're trying again to increase that number. We want to get to 50 just as soon as possible. And I'm actually having conversations, too, about what we can do federally to recognize profound autism in the same way, like with a proclamation or some sort of official recognition.
[00:29:15] Speaker B: So here in Texas, what we're doing is we're bringing in our state Rep, Charles Cunningham, and we're going have an open roundtable forum so parents can come and talk to him and really share their story. Like you did with Jack. Because I think, you know, people don't know what they don't know. And you know, as I say a lot in trainings, ignorance is not bliss. And you know, in our world. And so people have to really understand what profound autism is. And sometimes that means seeing it right firsthand.
[00:29:41] Speaker A: Most of the time it means that I can sit here and talk about it. But you really need to experience it. And I love what you're doing. I think that's a great idea for every state. Like people are like, oh my God, do I have to throw an event or something? And people get stressed out, especially caregivers or even providers too, because you guys are so busy and like that's hard. If the only thing you did outside of having a proclamation or a bill is to invite your legislator to come meet some people with profound autism. Because we have this proclamation and we'd love to meet you. That's where change happens. I think people are convinced that change happens by fighting with people in the comments on social media or by, by some sort of big protest march or something. And those things have their place. But what I've experienced doing advocacy for the last 20 years is the change happens in those small conversations with the right people. I'm excited. I think five years from now, 10 years from now, we're going to have come so far in getting our population what they really need. This isn't about just awareness. It's not, we have to start there, but it's a fact about getting what they need. And Representative Cunningham, he's been there for us and the fact that he's going to sit down and meet with everybody on March 17th, we're actually also going
[00:30:54] Speaker B: to give out safety kits, which little nervous, right? Because we're going to have seatbelt locks and we're going to have temporary door locks so that when you go travel for a hotel room, you know, and I know, I know it's going to bring up controversy and I know people are going to say this is inhumane, this is barbaric. And it's like, nope, what's inhumane is when your 8 year old old gets out of your seatbelt on a moving car going 80 miles an hour on the highway, but yet they won't get into an ambulance because of the fear of going through doors, which is exactly a situation that happened here locally. Like that's real. That's real. And it's real.
[00:31:26] Speaker A: And a Lot of those critics are just loud on the Internet, but they don't necessarily have impact. Like, it's really more about you helping educate the policymakers and decision makers about the realities of people with profound autism.
You know, Jack has wandered from our home. We've had the police searching for him. Like there's, I don't know of a more empty, frightened feeling than hearing people calling your child's name, like out in the woods, trying to find them. Like it's just an experience I wouldn't wish on anyone. I know there are worse things than that, but it just, that's something I'll never forget. It sort of seared on my heart. And so for years, Jack wore a tracking device on his ankle so we could find him quickly to keep him alive. And that is the ultimate form of love and respect for him. You know, we want to keep him safe. We want him to be able to be out and about and do things in the community. But we also acknowledge that there are parts of his profile that are dangerous and that could take his life. I mean, we've been in life threatening situations more than once. We love him and respect him and we want to keep him alive. So that's not, not stigma, that's not any sort of restriction on him. It's freeing for him because it allows him to be at home and like in the community. So, well, that's it.
[00:32:45] Speaker B: To get him out of the community, you got to keep him safe. Right. Or he could just stay home. But because I'm not saying you use one, but like if you needed a seatbelt lock or a harness in the car or what have you, that's so that they can access the community, the
[00:32:58] Speaker A: critics, like on social media, even those with lots of followers or whatever, that's not real life. When I go talk to legislators, last year we went to almost 70 congressional offices in one year alone. I've never had one say, oh, but they're saying this on social media? No, like when I bring them a one pager and I talk to them about what we know and what we need, usually the conversation comes back to how much does this cost? And then sometimes it is about what other organizations might be saying that affects. So you need to be prepared for those things. But for Jack, when it comes to things like seat belt locks or a harness or his tracking device, all of those things were things we used over time to help him learn how to be safe in the world. He's not using any of those things right now. As a 22 year old man right now. That's not to say he wouldn't at some point, but people make it sound like you're going to be in this sort of situation forever. But if the tools work like they're supposed to, they're not permanent, you know, they're just something like, keep you safe, you know, while you're learning, like, the rules of staying alive in the world, which is something everyone should be able to do. So.
[00:34:07] Speaker B: And then the other part of Alliance, I know there's a huge push for research, but the other part is you have a lot of wonderful SIGs, special interest groups, parents, colleagues, professionals are all doing I'm in the Meaningful Day one. I know many other. There's residential, there's all kinds of ones. And so if you're also a parent on here listening, you know, go check out Profound Autism alliance for you as well, because you can get on, talk with other parents, talk with other professionals, gain resources. I know you have an incredible conference every year in April in Boston.
[00:34:39] Speaker A: April 16th and 17th in Boston is the conference first, let me. Let me rewind a little bit. The special interest groups are for anyone who cares about people with profound autism. So it can be a caregiver, it can be a provider, it can just be a grandpa, anybody, a sibling. Anybody can join the sigs. And there's one on Meaningful Day services for. That's mainly for adults with profound autism. There's one about safety, and that's all about everything from wandering to having cameras in certain places so people are safe, talking about, like, what's okay, what's not. And then the other one is housing. They meet monthly. We have a wonderful person. Denise Lombardi is running the SIGs, and so she hosts those. She's warm and she's the mom of someone with profound autism, so she gets it. It's just a place to connect, share ideas. We want people to come together in the easiest of ways and just share what they're doing, what's worked, what hasn't in positive, productive ways. There's too much fighting and toxicity online, so let's just talk to each other every once in a while. We also do have a group called Caregivers Connected that's in the thousands now, and it is specifically for caregivers of people with profound autism. So there's. We love providers, but there's no providers, there's no researchers, there's no one else. It's just caregiver to caregiver. And it's a safe space that's very private where people can ask the questions that they really can't ask publicly. The conference, which we're going into year three now, we started, and I was afraid no one would come because I know caregivers, people with profound autism, it's very hard for them to get away for lunch, much less a whole conference. And so I just didn't know. But our first year, we've always worked really hard to have speakers that are going to be specific to profound autism and really have practical, helpful information, whether it's about an ABA program or augmentative communication, or whether it's about medical stuff like catatonia or seizures or whatever that our population is experiencing. So we've worked really hard, and we do this with Neshoba Learning Group, which is the program that Jack's been going to for all these years. And Katherine Johnson at Neshoba really works hard. She's like the MVP of putting this all together. Anyway, we've just seen an amazing response from the provider world, from the medical world, siblings, caregivers, all coming together. Our first year, we had about 600 people. Is that right? Holy. Remember? Yeah. But last year, our second year, we had a thousand people at our conference, so. Which is like, I couldn't believe it. I couldn't believe it. So this year, April 16th and 17th, in Boston, we have as our keynote speaker the director of the national institutes of health, Dr. J. Bhattacharya is coming, which I asked him to come, and I figured I would get a polite form, sort of thank you very much, but we're busy. But they agreed to come. You know, they want to be connected with our community. So he's going to come and talk about the Autism Data Science Initiative that's happening at the NIH and where profound autism research is going at the nih. So that's exciting. But then we have lots of other more practical sort of presenters, too. But, like, Cathy Lord's going to be there talking about the definition of profound autism. Dr. Matt Siegel is going to be there talking about this program that we run where we train psychiatrists and neurologists to serve people with profound autism. Over the last three years, we've trained 167 psychiatrist, neurologist, in 34 states to serve people with intense behaviors and profound autism. Like, that's real, like, on the ground stuff that's happening. So Dr. Matt, that's what I call him, he's going to present about that. And we're continuing that program. We just extended it for three more years. So I'm super excited. There's so Much information. As with many conferences, one of the best parts about it is like just being with other people who live the same life you do. We do have a virtual option for people who just cannot get away, which totally understandable. And you can watch the conference live or you can watch it at your convenience. We also have scholarships for people who are struggling, who have need financial assistance. So the deadline for that is March 1st to apply for financial assistance. And then we're going to pick the ones that we can fund. So we fundraise around that. Last year we were able to pretty much fund everyone who applied. So we'll see this year, like, how many apply for financial assistance. But we're going to do everything we can to pull money in to get people to the conference, whether it's virtually or in person.
[00:39:11] Speaker B: So, okay, so before we get wrapped back up, back on Jack and personal. So people can support Profound Autism alliance financially if they should. So choose correct these do.
[00:39:21] Speaker A: So we're a 501C3. We are lean, like, literally. This is the Profound Autism alliance headquarters, which is in my basement. We don't have big payroll, nothing like that. Everything we bring in goes directly to training physicians, helping people get to the conference. Conference, putting on the conference, like, things like that that are meaningful for our population. So there's not a lot of overhead here. This is all going pretty much right back into the community and making things better for people with profound autism. So if you go to our website, profoundautism.org, all the things I've talked about, you can look on the menu and they'll be there, like the events that we have or the groups that we have. But hit that button at the top that says give and you can be a monthly donor or you can. You can give us a billion dollars.
[00:40:07] Speaker B: That sounds great. Please do. Please do. Could you imagine what Judith could do with a billion dollars for profound autism?
[00:40:13] Speaker A: Amazing. But you know what? I have people who give like $10 a month, and I see that and I'm like, wow. I know that they're sewing into something that they know is going to grow, you know, and they believe in that. So every little bit helps us continue to do this work. And I've been saying this the last year and I really believe it. We're going to keep doing this work and working towards progress, and then if there ever comes a time where that's not working and we don't need to do that, then it'll be over. Like, I don't want this to be something that's like, oh, you know, we're. This autism organization has been around forever and what are they doing now? If we're not making a difference, we're not going to be here.
So just know that, like, we're motivated to change things and when we get to the point that we don't feel like we are, then there will be no more profound Autism Alliance. So.
[00:41:05] Speaker B: Well, at this point, unfortunately, I think you're going to be around for a little while too.
[00:41:11] Speaker A: But we're not in this just to create some organization with a name.
[00:41:15] Speaker B: Right?
[00:41:15] Speaker A: Like, we're in this to actually do something and make changes right now because it's so desperately needed.
[00:41:21] Speaker B: So it really is. So what are your hopes and dreams for Jack? What do you want next week for Jack?
[00:41:26] Speaker A: I would like Jack to be happy. That's. I want that for both my kids. And I want him to have connection in the world outside of me, you know, and so I don't think that has to be a large group of people. I want him just to have his core people that he loves and that love him. If he has that, then he can have connection and meaning in his life because people who love him will meet him where he is. So that's my wish for him and I want him to feel good. Like, he deals with a lot, a lot of health related issues like with epilepsy and, you know, other stuff. And so I think he carries a lot that we don't even know. And so I, I want him to feel good. I want him to have connection in the world and I want him to have good health.
[00:42:08] Speaker B: Wonderful. If there's a parent of a profoundly autistic person listening, what would you say to them?
[00:42:14] Speaker A: I would say, I hear this all the time where people say, you're not alone. And then I look around and I'm like, well, actually I kind of am right now. Except my dog. Dogs are here. It feels kind of empty. But if you are feeling alone, if you're sitting, you know, at home in like North Dakota or somewhere, Nevada, I don't know. And you're just like, no one understands what I'm going through. Even my family doesn't. I'm isolated, can't go anywhere because it's not safe. And I'm stressed and I'm hurt, you know, it could be physically injured. Like, it, there's so much stress in this life. I would encourage you, if you have it in you, just to get online, go to Profound Autism alliance, join caregivers connected, and just that one step will put you in touch with other people where you can just talk about your day and they're not going to judge you. Like, they're going to try to help you if you want help. And if you just say, I just need to know, I'm not the only person who's seen this. There will be others who get it.
[00:43:06] Speaker B: So you're definitely not alone. I know it feels like it, but, yeah, there are people who have walked really tough roads. Right. And they're unseen.
[00:43:15] Speaker A: They're so unseen. So you don't have to be unseen. And then it's not only that support, but then also people. People can help you find solutions that might make things even just a little bit better for your loved one with profound autism. But I would say as a caregiver for you, too, because you, through all of this, still matter as a person, too, and that gets forgotten a lot of the time.
[00:43:38] Speaker B: Really good point. I feel like that could be a whole nother podcast. So, Judith, I am so, so grateful for you spending some time with me. Your insight, your inspiration. Hopefully other parents have heard you and said I can start small. But, you know, I mean, you were just a mom who wanted to help her child.
[00:43:56] Speaker A: Yeah, Yeah. I was a CPA in my previous life. I was not, like, a lawyer or a lobbyist or anything like that. And I don't know why this came into my head, but when I started advocating a lot, I just started telling myself every day, and I would have to really, like, try to absorb this. Don't waste your time feeling intimidated. No one cares. Like, they don't care. Like, don't waste your time feeling intimidated. Just do what you feel you need to do. That's kind of what I did. Just put one foot in front of the other. I made mistakes, and I was scared and I was tired, and. But then I saw over time, as long as I continued and I didn't spend a lot of time allowing myself to feel intimidated or less than in these situations that just keep showing up. It works.
[00:44:40] Speaker B: It does. It does.
[00:44:41] Speaker A: Does.
[00:44:42] Speaker B: Yes. All right, Judith, thank you so much for being here. I can't thank you enough. I'm sure we'll hear a lot from you on or around March 17, and we look forward to seeing you at the conference.
[00:44:52] Speaker A: I'm gonna come crash your party on March 17th.
[00:44:54] Speaker B: You're more than welcome. More than welcome. To. 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, resources please reach out to
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Sam.
