Tony Mantor: Why Not Me ? - Barry Prizant: Shaping Compassionate Autism Understanding Through Passion, Research, and Personal Narratives

Episode Date: June 27, 2024

Send us a text Discover the profound journey of Barry Prizant, one of the leading voices in autism research, as he shares his rich experiences and insights on "Why Not Me." From his early da...ys at residential summer camps for individuals with disabilities to becoming a pivotal figure in the field, Barry's story is one of passion and dedication. Learn how his academic training in speech and language pathology and psycholinguistics, coupled with hands-on experience, helped shape a more compassionate understanding of autism, moving away from outdated theories like the "refrigerator mother" notion. Uncover the heartwarming tale behind a bestselling book on autism that has resonated globally, translated into 26 languages. This episode explores the author's shift from academic writing to heartfelt storytelling, weaving research with personal narratives that appeal to a diverse audience. We also delve into the importance of honest conversations in the autism community, highlighting the CERTs educational framework and the significance of understanding emotional regulation rather than merely controlling behavior. Hear from experts and families who share their experiences, offering a well-rounded perspective on autism awareness and support. Get inspired by the unique stories from autistic individuals themselves, like Justin, an artist living independently and making a difference in his community. This episode underscores the importance of listening to and learning from autistic voices, reflecting on how personal connections and mutual support can foster a more inclusive society. As we wrap up, we reflect on the mutual benefits of personal connections and encourage listeners to share the podcast and its inspiring stories. Join us for an episode filled with empathy, insight, and a powerful call to engage with and support 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.

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Starting point is 00:00:05 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. I'm Tony Mantor. Welcome to Why Not Me the World. Today's guest is very present. He is a leading expert on autism, an accomplished author, and his accomplishments are just too numerous to mention. You can easily find out more about him by searching his name online. I am very thrilled that he could join us today, so thanks for coming on. Sure, my pleasure.
Starting point is 00:01:14 So can you share with us what drew you to get into autism research? Well, if I could start with how I got involved with autism, I actually started out as a teenager working in residential summer camps for people with disabilities. Okay. And I always like to say that was about the same year I went to Woodstock. Okay. I started out working on the ground with people being responsible for their welfare,
Starting point is 00:01:41 happiness, you know, we lived with the kids. I did that for six years, actually. Wow. Then academically, I started to steer my interests towards speech and language pathology. Okay. So I am a speech language pathologist by training, but I was always interested in language and language development. So I had these two kind of parallel tracts of academically becoming more interested in language development. I don't even know if it's a field anymore, but I was a psycholinguistics major, which has to do with the relationship between thought and and communication and language. Okay.
Starting point is 00:02:13 And then I was working at summer camps with people who had problems communicating. And then went on from my master's and doctorate in communication disorders. That's quite a good background and how you developed that. Yeah. And I always say to have the experience of, you know, not the 24-7 experience that parents have. Right. But to have the experience of literally being responsible for the welfare and happiness of people with different kinds of disabilities.
Starting point is 00:02:39 and there was a mix of autistic people, both children and adults, it really grounded me. Sure. And it allowed me from very early on to question a lot of what I was reading in the academic literature, which I felt was very inaccurate at that time from my personal experience. Okay. So this was what, about 40, 50 years ago, something like that? Well than 50 years ago. Okay.
Starting point is 00:03:03 1960, 1968, 1969. Okay. So that was in the time when autism really wasn't well known and people didn't really know what it was all about. So that would say that you was kind of on the very beginnings of the knowledge that was to come out in later years in developing what autism is. Well, to some extent, I think there was a lot of misunderstanding about autism. Right.
Starting point is 00:03:31 I worked in, let's see, 1971, 1972, in a Buffalo Children's Hospital. I worked in a classroom program for kids who were all diagnosed as autistic. You know, this was just kind of the end of the era of what was called the refrigerator mother era that bad parenting caused autism. We never felt that way. Okay. The people I work with never felt that way.
Starting point is 00:03:54 So it was about three eras ago. Yeah, that's a long time for sure. I had Temple Granadon. Yeah. One of the things that she focused on was how we have gotten better. at not blaming the parents for the autistic children. Yes, absolutely, yeah. And I, because I've been around a while,
Starting point is 00:04:13 I organized conferences for many years because we do a parent retreat weekend. It's actually next weekend. It's our 26th annual parent retreat weekend, and it's a really great experience. So we had fundraising conferences, and I've hosted Temple three or four times. As a matter of fact, she called me the other day
Starting point is 00:04:30 just to chat about something. So I think she is just such an incredible, person and she really is the person who helped us think about how autistic people think and see the world. Yes, she is definitely great because she is in the realm of what you see is what you get. Yes. That's kind of refreshing in this world because a lot of people are trying to put this mask on and show people what they aren't rather than just showing people what they are. It is so true. And that's why I do, I continue to do what I started doing 50 years ago. I just, I, I, I, I, I, I now collaborate with quite a few autistic people.
Starting point is 00:05:08 I've published with them. I present. And it's just so refreshing to have, you know, no hidden agendas, not these layers of being politically correct. Right. The honesty and the sincerity and the loyalty. Yeah. I have some autistic friends who've really helped me out. They're just very, very loyal people.
Starting point is 00:05:26 Yes. And even when you talk about autistic kids or people who are more challenged in their ability to communicate, I've done a number of interviews with non-speaking people who use spelling boards. It's still the same honesty and the same directness. Yeah. So when you moved from the summer camps, then to the college world, what was after that and what developed to lead you to where you are today? Well, let me just say, without naming names of people that your listeners won't know,
Starting point is 00:05:56 I had great mentors, wonderful mentors along the way. So initially I was in university programs for speech. in language pathology, but then I was recruited at a relatively young age, early in my career, I was about 34. Okay. I was recruited to the Brown University Program in Medicine to develop a department in a children's psychiatric hospital. Wow.
Starting point is 00:06:18 And that was significant because it actually was the very first, if you want to call it speaks language pathology or now people refer to communication disorders. It was the very first department focusing on communication and issues and kids with issues that were defined as emotional behavioral disorders. Okay. And autism was kind of associated with that. So I was in a children psychiatric hospital for almost 10 years. And then went on to a few other universities after that.
Starting point is 00:06:47 But I've been in private practice for almost 30 years now. Wow, that's great. With what's called, you know, adjunct appointments in different universities. So I still go out there and get into preschools. Last week, I was hanging out with classrooms of four and five-year-olds. And I love him. I just love it. Yeah. Yeah, that's great. Because when you're working with kids, you get what we was talking about before, and that's the honesty factor. There's no filters. They just say what's on their mind. And it's kind of refreshing, actually. And sometimes you can get
Starting point is 00:07:18 the most intriguing conversations by that honesty. Yeah, absolutely. And, you know, the other piece that I've been so privileged to have is that I live in an area. I've lived in, I'm a New York City kid. I grew up in Brooklyn and then went way to school. But I'm, you know, I've been living in Rhode Island with my wife and raised my son, who's now an adult, for 40 years. And it's a relatively non-transient area. There are families who stay and they pretty much stay grounded here. So I know families whose kids I first met when there were three, four, five years of age were now in their 30s. So I have had the chance to follow the journey of families and all the stages and steps and challenges and victories and celebrations that they've gone through as well. Well, I can definitely relate to that because I'm originally from Maine.
Starting point is 00:08:05 Ah, there you go. Yeah, I go back home a couple times a year, and I fondly tell people that I'm going back to the land that I forgot because basically not a lot has changed. Right. There you go. Yeah, and like you say, people stay, don't move around much. You can follow the journey of a family from infant to young adult. And, you know, that's a very good thing to live with.
Starting point is 00:08:27 Yes, it is a good thing. And I love it when, you know, in this area. You ask for directions to go to a particular place to say, oh, well, you make a left turn up the road where the Texaco station used to be. Yeah, I know exactly what you're talking about there for sure. So you help everyone from kids to adults, is that correct? Yes, yeah. I mean, literally, I'm involved right around the time of early diagnosis of some kids. I mean, families whose kids were just diagnosed a month or two before, especially when I go out to schools and preschools.
Starting point is 00:09:00 But I also am very involved. And I don't know if you know, but I also do a podcast. Okay. With an autistic audio engineer. Oh, that's great. Yeah, his name is Dave Finch. And we've been doing this for three years. It's called Uniquely Human, the podcast.
Starting point is 00:09:16 Again, I've had the privilege to interview and get to know, oh, at least 50 autistic people who specialize in different areas in their lives. Yeah, that's nice. That's kind of what I've been doing over the last year. Exactly. Yeah, I'm interviewing people that are either autistic, raising autistic children, finding out that they are autistic or finding out their autistic later in life.
Starting point is 00:09:39 It's been such a wide view that I've had. And I'm just hoping that people that listen pick up something that can help them in their lives. And hopefully it's just a win-win situation for everyone involved. Yes, yeah. And when I have kind of younger professionals kind of ask, well, how did you get to where you are and what you do. And I say, hang out with families and hang out with autistic people. Yeah. I did the academic thing and I'm not going to go through my credentials, but I was lucky enough to
Starting point is 00:10:08 be promoted and do all that kind of stuff. And I still say, by far, most of what I've learned is from families and from autistic people. Yeah. I follow the research and I read it, but if you want to get the authentic lived experience, as you know, that's what you do. Absolutely. So yeah, you've done so much. and I know that everyone out there definitely appreciates it. But so that my audience can know what you've done, I think they need to know that you've been invited to speak at the United Nations twice. That's correct, yeah, yeah.
Starting point is 00:10:38 That must have been pretty awesome. Well, first of all, because it's the United Nations, it definitely has a multicultural focus. Yeah. So there was a mom, you know, from Africa with her son that when he was young, they thought he was a demon, you know, and there he is this wonderful young man with him. It was, first of all, just the recognition and the exposure given to autism.
Starting point is 00:11:04 And the two times I was there, actually I was there three times, one time just as a visitor, very progressive, I mean, very forward-looking and really trying to put aside the whole stigma across cultures of what autism is. So it was a wonderful experience. Oh, I can just imagine it was. And you brought up a good point. there are many countries around the world that even today think that autism is a product of the devil and it's just a misconception and I think that just definitely needs to be changed.
Starting point is 00:11:33 Yeah, and there are countries where there isn't even the word for disability or autism in their language. And that's a little bit different because in some of those cultures, especially agricultural societies, autistic people very often fit very well into that. It's a very physical lifestyle. It's a very routinized lifestyle, a very healthy lifestyle. And you know, we're We interviewed a woman, and this is in the U.S., obviously, an autistic woman who's Ojibwe. She lives in Minnesota, and she's very involved at the state level as far as advocacy. She talks about that in the Ojibwe language. There's no word for autism and there's no word for disability, and they just embrace people for who they are.
Starting point is 00:12:13 Wow. Yeah. That's actually pretty good. Yeah. Because that way, there's just no labels at all. Yes, absolutely. Yeah, it's too bad that people in the world just can't discard these labels and just start. accepting people for who they are. Yeah, it's so true. And what this person said, her name is Jules Edwards.
Starting point is 00:12:32 What she shared was that, but then they have to deal with the real world and get a diagnosis and put a label on a person so they can get the funding for the support. Yeah, that's sad because that's where we have to get the government involved. You mentioned that you have a podcast and it's uniquely human. Is that correct? Right, that's correct, yes. Is that based off your book? It is. So could you tell us a little bit about that? Yeah. Well, the book was published in its second edition two years ago. It came out in 2015.
Starting point is 00:13:01 Okay. It was published in an expanded edition in 2022. I was lucky enough to work with the dad because so much of my writing had been kind of academic writing for years. So I worked with Tom Fieldsmeyer who does everything from people write their memoirs. And he has an adult son with autism. So we became very good friends. And the book has been the best-selling book. in autism since 2015. Wow, that's great. It's a storybook. It's a book of stories of kids and families,
Starting point is 00:13:29 and then I bring in kind of some of the research we've done over the years. You know, quite honestly, I never expected it to get the reception that it's gotten. It really blows me away. I mean, I get, I get notes, emails, letters from parents whose kids were just diagnosed a week before, and somebody recommended the book. I've gotten notes from autistic people in their 60s. saying, oh my God, I diagnosed myself by reading your book. Wow. And so it's just such an honor, you know, to be able to put something out there. And it's really the only mainstream work that I did.
Starting point is 00:14:07 We have an educational model and we have these books that are kind of written for graduate classes in universities. And my son and my wife would hear all these stories that I would tell about what I've learned and they would say, you need to write a storybook. So I went ahead and I did. it and quite honestly I never ever expected the reception so it's now translated into 26 languages wow that's so nice I can fully understand your non-comprehension about how it's doing well because I was in the same situation with my podcast and I've been totally amazed at what it's done so far yeah I'd
Starting point is 00:14:40 started to help a few people doing a couple of shows a month didn't expect it the last you know much more than a couple three months and then all of a sudden it just exploded on me so you just never know what to expect yeah there's such a need for straightforward honesty, you know, and also there's such a need for podcast and information that's all not heavy and not doom and gloom. Absolutely, and that's a great thing. I've had the privilege of interviewing. Well, I don't call it interviews. I call it conversations like you and I having right now. Yeah. I've had conversations with people that have been diagnosed in their 30s and, of course, the 40s. Yes. I've also had Dr. Rachel Mosley where we talked about suicide,
Starting point is 00:15:22 among young autistic females. And when people heard that, they thought it was going to be very dark and very morbid. But it wasn't. It was all about information. Yeah. And of course, I've talked with Temple and just so many people that have given such great information that will definitely help others. That's right.
Starting point is 00:15:41 I talked with one lady that her son developed from a small kid who was six foot two, 390 pounds. And when he had a meltdown, it was just devastating. Those things have to be put out there so that people can understand what needs to be done to help so many others that are living day to day. Yeah, I think for parents and family members and professionals who are really in the trenches every day, one of our guests once said, my autism gives me a BS barometer. I know if this person is just kind of, well, they read something or they're a self-appointed expert as opposed to they've been there and they've lived. the experience. And I think people really appreciate it. And so it's so important that you're doing
Starting point is 00:16:25 that, absolutely. I love that. B.S. Barometer. I think I'm going to have to remember that. I think the biggest thing out of hopefully your podcast and mine and others out there is getting the understanding of autism because so many people are aware of it and they accept it, but they truly just don't understand it. And then it gets laid on autistic people and families. As a matter of fact, I'm now kind of sketching out possibilities for a follow-up book, and I'm thinking of the title being misunderstood. Yeah. Yeah, that's great. I mean, the kinds of things, the kinds of attributions made about autistic people,
Starting point is 00:17:02 you know, going way back to Leo Canter in 1943, and it's just horrendous. Yeah. Yeah. Yeah, it's as well, yeah. Yeah. I think that autism was actually first diagnosed in like 1910, and it was two words, psychotic and psychotic. Yes.
Starting point is 00:17:18 So to get it from those two words to what it is today, that's a pretty large leap, actually. Oh, absolutely. And I think the other thing that I know, I could speak personally, but I really try to emphasize when I give talks now, is that if you understand people who have very different what we call developmental profiles, they're really good at some things and not so good at other things, then you could reflect on yourself and be more self-aware of what you're really good at and what you're not so good at. Yeah, that's actually good, self-diagnosis. Now, I think you come up with something else that people need to know about. I think it's called what, certs? Yes, yeah. So can you elaborate on that and tell us a little bit about it?
Starting point is 00:18:00 Yeah, that's an educational framework. Okay. In which we identify what we feel are the highest, what we call the highest priority areas to work on. Okay. And so certs stands for the SC is social communication. And, I mean, there's nobody who disagrees with the fact. that communication opens up so many doors to a good quality of life. And the second domain is the ER of certs, emotional regulation. And we feel that's something that's really been left out for so many years. Because people talk about behavior management. How do you manage the behavior?
Starting point is 00:18:37 So you just spoke about a young man who was 300 some odd pounds and when he has a meltdown, oh my goodness. We would say, why is this young man dysregulated and how can we help him? to maintain a well-regulated, emotional and physiological state. And that's not even in the DSM diagnostic criteria. Yet it still is one of the most challenging things, even for the most intellectually gifted autistic people. You know, anxiety issues such as that are really big.
Starting point is 00:19:06 So that's social communication, emotional regulation. The third domain and the final domain is the TS, and that's transactional support. And it's a fancy word. I'm not going to get into the specific. of what transactional is. But it's all of the ways that we support an individual, a family member. How do we support them educationally? How do we support them in developing trusting relationships? So we talk about learning supports and interpersonal supports. That's a huge issue. A very dear friend of
Starting point is 00:19:39 my Michael John Carley, who's autistic, we wrote a two-part article on developing trust with autistic people. but families so often don't find professionals trustworthy or school districts trustworthy. So that's the obligation that falls on the rest of us. How do we provide support, which we call transactional support, which means it's a two-way street? You know, how do we provide support so that, you know, a person on the spectrum and the family could have the best quality of life? Yeah, that's great. Because when you stop and think about it, when a young child is diagnosed autistic and they get that label,
Starting point is 00:20:14 even though the school system will treat them a little bit differently in trying to help them, if they're not fully prepared and don't understand it, then ultimately it can spiral out of control. Absolutely. And one of the things that is kind of tricky to understand is that even sometimes the best intentioned people, the people who are really well intentioned are doing things that are just throwing gasoline on the fire. Yeah, absolutely. It reminds me of a lady I spoke with that was a special needs teacher. and because of that, she thought she was just going to be a great autistic mom. And ultimately, when she started living at day-to-day, she had to stop and reevaluate things because it wasn't exactly as she expected.
Starting point is 00:20:53 Absolutely. And there's another angle to this as well. You can have a teacher who's wonderful with autistic children or a particular child. They might be, you could have a, whatever, occupational therapist, speech and language pathologist, who's really great with a kid, but they don't know how to communicate with parents. and they unintentionally make the parents feel more guilty. They're not doing enough. Right.
Starting point is 00:21:15 That's something that's a big part of my work. I work a lot with families and help professionals on really to learn how to listen to families and understand where they are in their journey. Yeah. So in some cases, it sounds like you could be a mediator. You're just helping parents and the professionals find a gateway to working together to help that autistic child. Exactly.
Starting point is 00:21:37 I mean, when I do a school consultation, my usual routine, is I will observe a child for some period of time in their everyday routines in the classroom and in the school. Then we meet as a team, but I always insist the parents be invited in. Okay. So we all sit down and have this intensive three-hour block of I'll get to know a child a little bit. I'll read some reports. I'll meet with the team.
Starting point is 00:22:00 What are things that are going well? What are the things that are not going so well? And let's have the parents' voice involved in all of that. Yeah, because ultimately they're going to have to live with it on a daily basis. Exactly. Yeah, and the more they understand and the more they can learn about their child, ultimately, what they're doing is creating an environment that can lift their child to the next level and hopefully better development as well. And it goes both ways. Sometimes parents can teach the professionals. Sure.
Starting point is 00:22:27 Little things that work and help the professionals have a greater understanding of the child because the parents see the kids at their best, when their kids are most challenged in a lot of different settings. Yeah. So have you had to have. a situation where you set down with a parent or a support person or both, you looked at it and you said, oh, this is a complete disaster. But yet, after listening, talking, going through all the conversations, it turned out to be a very big success. Yeah, sometimes it happens around communication, especially a few years ago when people would always, if a child's non-speaking or not speaking yet, that people are pushing speech much too much. And the child is not ready.
Starting point is 00:23:11 Maybe the child has what's called some motor speech issues, neuromotor issues. And I say, no, this child needs another kind of system to communicate. Very, very often, I mean, there are stories. And we've interviewed some of these people on our podcast of autistic people who didn't speak, who were thought of a severe behavioral disorders and intellectually disabled. When they got a communication system, such as using an iPad with voice output or something like that, there was a huge turnaround. So that's one area.
Starting point is 00:23:40 where I could make contributions around helping a child's communication system. And sometimes it has to do with the relationships between professionals and parents, where the professionals, let's say parents, just want to do the best for their child, and they're extremely stressed out and their thought of as being too aggressive that they're blaming the professionals for not doing enough or not listening. I try to go in there and say, listen, we're all on the same team. So let's try to clear up some of these misunderstandings. But I often, I mean, the word you use is absolutely correct.
Starting point is 00:24:11 I mean, I often find myself in the role of a mediator and try to point out. But I also find myself going into a consultation where I'll point out, there's a lot to celebrate here. You know, this uxter has made some real progress. You know, the parents say, oh, well, why isn't he doing this? And I'll say something like, well, you know, what was your son or daughter like six months ago? And then they'll say, yeah, I guess he has or she has made a lot of progress. I think it's important for families to also kind of savor those moments and for professionals as well to savor those moments when everybody could say, yes, we're headed in the right direction.
Starting point is 00:24:50 We love this youngster and let's all celebrate the fact that we've had some breakthroughs here. Yeah, sometimes you have to step back and look at the body of work. You just can't look at the moment in time right now. I know several people that they look at the moments and all they see is the last moments of time, be a day, three days, or a couple of months. They don't look at the six months to a year and see how their work has really turned something very, very positive. Yes. And I mean, your comments is just, I really get it why your podcast is so popular. Your comments are just so spot on. So let me share a quote that from a mom from our parent retreat a few years ago. My name was Lucy. And I asked her,
Starting point is 00:25:31 what do you value in professionals? And their son just had turned 30. And I first met him when he was six. And Lucy said, the professionals we have always valued and had the greatest gratitude for were not the ones who ever judged us. They were the ones who joined us on our journey. And what you just said is right on that point. You can't just take a snapshot and live in that point in time in that snapshot. You have to view it as a journey. Absolutely. I hear that from all the parents I talk with and they say that it's not just a short race.
Starting point is 00:26:01 It's a marathon. So you're standing in an auditorium in front of about 1,000, 2,000 people. You've got people that know nothing about autism. You've got just diagnosed autistic people, kids that have just been diagnosed, just the whole spectrum. What are you telling them so they can understand what their journey is going to be? Well, I mean, it sounds like a shameless plug here, but I get a lot of invitations now kind of similar to that for keynote addresses. And I start out with, let's understand that an autistic child or an autistic person is uniquely human. It is not a list of deficits, is not a list of challenges.
Starting point is 00:26:34 is not a list of challenges. Their reactions are human reactions like your reactions are, my reactions are. So just coincidentally, about three weeks ago, I gave a talk at a conference in North Carolina, organized by parents, a wonderful foundation where all the money to make goes directly to parents. It's called Autism Strong Foundation. And the audience was about 250 parents and maybe about 20 professionals. What I try to do is have that theme, if that's the topic people want me to talk on. and have it resonate at an appropriate level so people can kind of relate the message to what they're doing in their lives, whether they're professionals or parents.
Starting point is 00:27:13 The biggest thing that I've come across is everybody has their unique story to tell. Yes. The old saying you've met one autistic person, you've met one autistic person. Yes. The stories that they have to tell on how they adapt, how they learn from each other. And in just this short period of time, if you go back and you listen to my first one all the way, to the latest one at this out is you get a feeling for these people and how they do learn how to adapt and then eventually they found that they build off that foundation and then things can grow.
Starting point is 00:27:48 And it's going to be a challenge every day with some of them, but at least they're growing and they're headed in the right direction. That's right, absolutely. And I think for professionals who are listening to your podcast, we have to play that role. We have to kind of help them understand how they're growing and the changes that they've gone through. Sometimes when people will say to me, oh, you know, I have this child in my classroom and he screams all day and it'll drop to the floor before going into the cafeteria. And sometimes the first question I'll ask will be, okay, now let's talk about when he's doing well. Let's talk about what's supporting her when she is motivated and engaged and in a well-regulated state because that gives us the clues as to what's working.
Starting point is 00:28:27 Absolutely. Our conversation has covered a range of important topics. I believe it's been both engaging and informative. I believe there's so much more that we could discuss and analyze. What is one last topic that you might like to focus on and put out there? Oh, that we're all always still learning and that we need to listen to the stories of families and we need to listen to the stories of autistic people. Yeah.
Starting point is 00:28:54 I like to share that it's been the, because I go back before Temple Grandin. Right. You know, before Temple stood up, I think it was 1986, at an Autism Society conference and said, you want to know about autism? Ask me. And I'm autistic. And the whole room turned towards the earth. The field has changed in the most positive directions because of the voices of autistic people and because of the voices of family members. So I was promoted in an IED league medical school at the highest levels. And I still say most of what I learned has come from even the last few years. Discussions with autistic people on our podcast, hanging out with autism. people because they have changed what's happening.
Starting point is 00:29:34 So the one thing I would say is listen to autistic people, you know, listen to family members, get to know them outside of a classroom, outside of a clinic, because you'll become a better person if you do. Yeah, I think one thing that truly resonates with me goes right back to my very first episode. It was a lady out of London and she got diagnosed into 30s. What really blew it up for that podcast episode was the fact that she really showed how focused people can be. Yes. And how literal they can be.
Starting point is 00:30:10 Because her mother came in one morning, opened up the drapes and it was sunny day. And she goes, this is a great day for the human race. And from that point on, she thought she had to race everywhere she went. Yeah. She was trying to beat her time. You know, and that just lit up and everybody just loved that episode because of the way that she put that focus. into place. Yes. It's just the stories that they can tell, and they can tell it in such a way that we can smile and laugh with them, not at them. I think that's a real important way that we need to
Starting point is 00:30:41 factor in what they do. Yes. Yeah, and I think, you know, one other important point that I would emphasize is the giving back. Even if it's not intentional, like an autistic person helping you out with something, it's the giving back. So there's a young man that I talk about in my book, and I videos of him when I present. His name is Justin Canna. I know Justin since he was three. He's now in his late 20s. He lives in his own apartment in New Jersey. He teaches art because he's an artist. His parents were told he's going to need one-to-one lifelong help. And I have an interview with an employer of his. And the employer, it was like a multimedia studio that he worked in for a year. And the employer said, Justin's a great artist, but so what? There are lots of great artists. Justin, for the time
Starting point is 00:31:26 he worked with us, he was kind of an intern. I'm in a media studio. Justin was with us. He was a beacon of light who inspired everybody. And I think there's that giving back. Once you get to know, like our dear friend Stephen Shore says, once you get to know one autistic person, you get to know that one autistic person, but it's also what you get back from that. That's very important. Yeah, yeah, I agree. Great conversation. I really appreciate you coming on. Yeah, absolutely. My pleasure. The pleasure's been all mine. Thanks for taking the time out of your busy schedule to listen to our show today. We hope that you enjoyed it as much as we enjoyed bringing it to you. If you know anyone that would like to tell us their story, send them to
Starting point is 00:32:17 tonymentor.com. Contact, then they can give us their information so one day they may be a guest on our show. One more thing we ask, tell everyone everywhere about why not me the world. the conversations we're having and the inspiration our guests give to everyone, everywhere that you are not alone in this world.

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