In celebration of Episode 200, Vikram Panchal, and Hot Seat parent from episode 184 join us to flip the script and interview, me, Mary Barbera. Whether you’re a new listener or a long-time community member, I hope you learn something new and gain some insight into my own autism journey.
Parents in Denial About Autism
I start every episode the same, by asking my esteemed guests whether parents or professionals just how they fell into the autism world. Today I share the beginning of my journey, the diagnosis of my son Lucas who is now 26. I have shared this story many times and today I reflect on the signs, emotions, and feelings of denial I experienced leading up to his diagnosis at age 3. As an adult, Lucas still needs full-time care but is really living his life as happy, safe, and as independent as possible for himself.
My Career: Behavior Analyst, Autism Author, Course Creator, and Podcaster
As I began my journey, I really began to understand the need for advocacy for autism families who drove my involvement in the community. I share where my inspiration to become a behavior analyst started and how that led to my first book, The Verbal Behavior Approach, now available in 17 different languages. From that, I built my courses and online community which reaches an audience of over 90 different countries around the world. And in 2019 I launched this podcast, Turn Autism Around. At episode 200 we have reached over 1 million downloads. Since the launch of the podcast my newest book, Turn Autism Around was released and has recently been translated into Spanish. My newest addition has been the assessment software that will add quantifiable, usable data to my formerly handwritten one-page assessment. Be sure to check out the link for that for more information!
Tips for Parents and Professionals
Vikram asks me some great questions that can help parents of young children, older children, and professionals alike. For parents I say, Don’t Wait. Don’t wait for a diagnosis, seek information and evaluation as soon as signs and concerns begin. Secondly, Learn More. Talk to parents and professionals, and attend seminars and online courses. Become the captain of the ship because you are your child’s lifelong advocate. Finally, Get Help. You don’t have to and shouldn’t walk this journey alone, reach out to your community to find available resources and support.
I am so proud of this podcast and the community I have created. The more the word gets out, the more lives can be changed. Please continue to listen, like, share, and comment. Here’s to episodes 300, 400, 500, and so on!
Vikram Panchal on the Turn Autism Around Podcast
Vikram P is the proud father of two children, Nahum and Hosanna. He and his wife, Leah, live in Melbourne, Australia where Vikram serves as a pastor and evangelist.
- Celebrating 200 episodes of Turn Autism Around.
- A look into Mary Barbera’s autism journey.
- Overcoming autism denial.
- From BCBA to author, content creator, and podcaster, Mary Barbera’s career.
- What does it mean to Turn Autism Around?
- Top 3 tips for parents of young children.
- Tips and advice for professionals in the field of autism.
- Can the Turn Autism Around Approach help older children too?
- Solving Speech Delays in 4-year-olds and Autism Denial: Hot Seat #6 with Vikram
- Lead Your Life on Apple Podcasts
- Autism Dad Advice | Interview with Dr. Charles Barbera
- Podcast – Autism Mom, ABA Help for Professionals and Parents
- Mary Barbera on Facebook
- Mary Barbera on TikTok
- Mary Barbera on Instagram
- Mary Barbera Workshops
Vikram Panchal – Turn Autism Around Podcast Transcript
Transcript for Podcast Episode: 200
Revisiting My Autism Journey: From Overwhelmed Parent to Autism Leader and Advocate - Vikram Panchal Interviews Dr. Mary Barbera
Hosted by: Mary Barbera
Guest: Vikram Panchal
Mary: You're listening to the Turn Autism Around Podcast Episode number 200. We are at 200 and I am super excited. Today we're going to do something that we haven't tried before where I have a member of my online community and his name is Vikram. He is the host of his own podcast and he's interviewing me today, which is great, and hopefully you like some of my answers. We talked all about how my information has reached people from over 90 countries at least, and we also just celebrated our 1 million downloads, audio downloads of the show. So it's a really pivotal milestone for us. And I hope you love this episode. Let's get to it.
Narrator: Welcome to the Turn Autism Around podcast for both parents and professionals in the autism world who want to turn things around, be less stressed, and lead happier lives. And now your host, autism mom, behavior analyst and bestselling author Dr. Mary Barbera.
An interview with Mary Barbera by Vikram Panchal
Mary: Okay. So this is going to be a very different episode to celebrate 200 episodes. I have Vikram Panchal on the podcast and we are turning the tables and Vikram is going to interview me now. Just a little aside, I may have mentioned this in the intro a little bit, but Vikram has been on the podcast. He was in podcast, 184, we can link that in the show notes. Vikram found my courses six months ago. He's been an active member of our community. And Vikram also the reason he got the quote unquote job of interviewing me is because Vikram has his own podcast, and that's called Lead Your Life with Vikram Panchal. And he wanted to interview me. So this episode is going to actually be serving both roles. It's going to be episode 200 for me, and it's also going to be a Lead Your Life episode. So, Vikram, why don't we get to your questions? We haven't rehearsed. This is going to be off the cuff and hopefully it'll give you listeners whether this is your first time here or if you listen to all other episodes, which is I only a few people I know have actually told me they listen to all the episodes. But even for you guys who have been with me since the beginning, I hope to give you some more information that maybe you didn't know.
Vikram: Yeah. Thanks, Mary. Well, thanks so much for having me on. I feel honored to be the one interviewing you after you run your own podcast for quite some time now. And so it's a real honor for me to be here and to be flipping the tables, like you said, and to be asking you the questions this time around. So I know that one of your favorite questions, whenever you begin your interviews to ask people what their fall into the autism world was like? And so many, many people have come across your program in your course over a number of years. So, you know, I'm sure people have heard your story before of your fall into the autism world. But for those who may be tuning in for the very first time, can you briefly describe your fall into the autism world and what got you started on this mission to change so many people's lives, including mine.
Mary’s Fall into the Autism World:
Mary: Okay. So I really knew very little about autism when my first born son, Lucas, started to show signs of autism after his first birthday. I didn't notice anything until my husband first mentioned the possibility that Lucas might have autism when he was just 21 months old. And that was just two months after I had my second son, Spencer. So I was overwhelmed. I had Spencer. I was taking Spencer to a well visit for his two month well visit and leaving Lucas at home with my husband. Charlie said, Well, ask the doctor how many words Lucas should have, because as an emergency medicine physician, he was beginning to worry about Lucas, not so much just his language, which seemed to have stalled. But he was really worried about Lucas's lack of reaction to the baby, because Lucas was 18 months and he should have, at least from Charlie's experience, started to kind of realize, Oh, Mommy's Belly's big. Like literally, I say in my recent, most recent book that we could have brought home a plastic baby doll, and it wouldn't have mattered. That's how his reaction was so dull with the new baby. So I got home. The doctor said he should have 20 or 25 words at 21 months. So literally on my way home from the doctor. Ah. I was counting the words that I heard. Some of them I hadn't heard for a long time, and I was even counting E-I-E-I-O as five of his 20 words. I was counting this. I didn't know what delayed Echo Alia was, but he used to do this script. Please do not be the doc's quack quack. Literally eight more words like grasping at straws. And when I came home, he said, Well, how many words should Lucas have? And I said, Oh, he said, 20 or 25. And my husband said, Well, he doesn't have those. And I said, Oh, no, he does. I counted. And then my husband said, So you don't think he could have autism? And I remember standing in my family room with the blue carpet, and I remember being like, What are you talking about? Like the thought had never crossed my mind. Well, this was before Facebook. The autism rate was one in 500. It was, you know, not as common. So but I told them on that day, Lucas doesn't have autism. This is 1998. And I never, ever want to hear the word autism again. And I completely shut him down. We never talked about it again until he was like two and a half. And the preschool teacher and the director wanted to bring us in and told us that he wasn't ready to progress to the three year old class. And then finally, I got out of denial and got him diagnosed the day before he was there, his third birthday in 1999. And, you know, that was my fall into the autism world. I actually fell into it. I mean, if I would have really not been in denial and I mean, I wasted like 15, 18 months before his diagnosis and treatment started. And those were critical time periods for me. And prior to that, I did a clinical rotation as a registered nurse student. I did a clinical rotation, so I saw teens with autism. And that was very different from seeing early signs as a toddler. So, yeah, so I did a podcast interview with my husband and we talked about coming home from the doctor's visit and everything. We can link that in the show. I think that's a really good episode. And I think in your case too, Vikram, when I interviewed you, there is often a disconnect between a two parent household with one of their parents being in denial and one not. And in my case, it was me. And I told Charlie on the day I never, ever want to hear the word autism again. And now I say it, speak it, type it, write it constantly.
Vikram: Yeah, well, I didn't use those same words to my wife, Leah, but it was similar, you know, because autism is so scary and there's so much negative stigma attached to this word. You feel like your whole world falls apart the moment you realize your child could have autism. It's not something you really want to consider. Not for your child anyways, you know, maybe for someone else's, you know, like you don't know. But it can hit home so hard, you know, so close. So I can understand how overwhelming it is. And we've been through that whole journey as well. And that's the reason why we found you online and it's made such a dramatic impact in our lives. And so I wanted to ask you, because, you know, for those who are listening, it can be incredibly overwhelming and it can bring up a lot of emotions, you know, to consider that your child could have autism or people are in the process of getting a diagnosis. So, you know, share with us like you were obviously very overwhelmed when you got that diagnosis. And I've heard your podcast on the way back, you know, you were in tears and yeah, I can totally relate to that. So how did you flip the script? Like, how did you go from becoming an overwhelmed parent to now becoming a board certified behavioral analyst to bestselling author on the topic of autism? You know, you're a course creator. You're also a podcaster as well. And like you say, and I really believe it, you're so genuine, you're on a mission to change people's lives. And I think that is so noble, you know, and I'm so thankful that what you're doing is not. I don't believe it's just a business. I believe it's a service. You know, it's a service for those who are struggling in this area, knowing how to grapple with it. So, you know, I'm just very, very thankful for what you're doing. So, you know, tell us your story. Like, how do you go from someone very overwhelmed to someone who became very positive, changing your son's life now, changing countless lives all around the world.
Mary’s Start and Career:
Mary: Yeah. So once Lucas was diagnosed, I did have a lot of things going for me. I was a registered nurse. I had a masters degree. I got a masters degree from the University of Pennsylvania in nursing administration by the time I was 25 years of age. And so I always worked in the neuro field, worked with head injury patients and spinal cord injury patients and patients with brain tumors and older people who had strokes. So I knew right away I would help people talk again. I help people walk. You know, they had incontinence. I dealt with potty training and just all these things. And then I also was a manager. So I manage 24 seven staff and I managed hiring and firing and being nice to new people so they wouldn't quit. And I also was married to a physician and we had not only the resources, not really the financial resources weren't as important as knowing how to write emails, keeping organized, being like, okay, ABA is the most proven treatment for kids with autism. Okay, where do I have to get in line? Who do I have to call? You know, those are the kind of skills, those advocacy skills that made all the difference. Because in our state, in the state of Pennsylvania, even back in 1999, when most people were putting a mortgage on their house to pay for ABA therapy, some other parent had come before me and he had figured out a loophole in the whole medical assistance system within Pennsylvania. And so I was able to get in line for Lucas to get medical assistance regardless of parent income, which I was just like somebody said, I'm like, How do I get ABA? Or You got to get Lucas on medical assistance. I don't want Lucas on medical assistance. I have insurance while your insurance isn't going to pay for anything. So you got to get him on my you know, so it was that kind of okay, I'll go in that line, you know. Yeah. Going down to the medical assistance department and, you know, and getting to see people that didn't have any financial resources. Like I became such an advocate for Lucas and for all kids almost immediately because I was like, If this is the system, you got to go down to the Department of Medical Assistance, whatever that is. You have to go sit, wait, produce all your financial income. Go through all this. And I have a car. I had a computer. I had Internet access back in 1999. I became such an advocate. I was the founding president of the Autism Society in my county. I was like, I am fighting not just for Lucas, but for the single mom. English as a second language. No car, no computer. Like, if this is the struggle, then I am all about advocacy for all kids. And so right away I became. Really? You know, like what? What line do I have to stand in who I am? And right away, I ended up in a due process case, which is like an educational court, which I was like, What? Because Lucas had gone to a typical preschool and what they were recommending once he turned three and was diagnosed with moderate to severe autism was not what I had in mind. And I was like, No, he's not going there. So I ended up in due process, which was a whole nother can of worms, you know, a whole nother escapade. And it was actually my first lawyer who had an adult son with autism. And he took my case pro bono, which means for free. Mm hmm. And, you know, assuming I was going to win the case, which nobody ever really wins a due process case, you could just keep appealing. And at some point you said, Oh, but that's another story. So when I was up on the stand for 5 hours and I got down, he said, You should become a behavior analyst. I'm like, What's that? And he said, Well, you need a master's degree. You already have a master's degree. You need to know, it's not online. It was a distance learning program. So literally it was through Penn State. I got a box of VHS tapes and a box of binders, and I could do it at home. And it wasn't back then. This happened. I studied in 2002. I got a postmasters certificate from Penn State and took my boards in 2003. And so I've been a CPA since, but it was my first lawyer, which I wouldn't have. Ended up there. You know, I wouldn't have known about that. And then in terms of author, then it was just like, oh, my gosh, I need to. I became a BCBA. I started working through a statewide grant through the Pennsylvania Department of Education. And then I also was mad about pediatricians and their lack of knowing the signs of autism. So I got involved with the First Signs Grant that went around the state educating physicians on early signs of autism, which led me into, like, seeing parents and trying to help them. And so finally, it was like one woman who was also a nurse had a little son with early signs of autism. I was waiting for a diagnosis, and she came over to my house in exchange for some videos I needed, and I helped her. And she's like, You have to help me. What can I do? And I realized that all the books I had used were out of date, seriously out of date. And a lot of the information was in my head. And that's when I decided to write my first book, The Verbal Behavior Approach, which I didn't think was going to be a big deal, but it was a big deal, and it still is a big deal selling better than ever and it's in 17 languages. Which put me on the map to travel around the world speaking on autism and then eventually found my way into the online world and what I do now.
Vikram: Yeah, that is awesome. So you're really a pioneer because, you know, you're giving me a bit of context into your journey, which is probably, I would say in many ways, a lot harder than what parents may be experiencing today, because, you know, now we're in the 2022, of course, and, you know, it's been about 20 years since you began your journey. And so VHS tapes are no longer used, now we're online. Everything is on demand, you know, everything is easily accessible. So it just makes me really inspired because for myself as a parent and maybe for other parents who are confused and overwhelmed, they're tuning in today and they might be inspired as well, because now we realize that, wait a second, we don't need to be overwhelmed anymore. There's stuff that's available online that's within our grasp. You know, we don't need to go to court systems and all these things to pursue what should have been available at our fingertips from the beginning. So, you know, that just makes me even more grateful for what you're doing and for what we have available to us. So, you know, I guess I wanted to ask you, you know, as a pioneer in this field of turning autism around, you recently released a new book and that's behind you right now. It's called Turn Autism Around and it's here. Yeah, that's right. And it's a phenomenal book. In fact, my wife happened to be looking online and I don't even know how she discovered you and your book and everything you're doing. But she bought the book and it arrived in the mailbox and she showed it to me. And at that point of time, I was in denial that our son could have symptoms or could have autism. So it was very new. But when I saw this title, I said, there's something in this and it grabbed me and I said, wow, you know, there is hope in this. We don't just have to accept a diagnosis, so to speak. We can turn things around. It may not be that the person is free of those symptoms for the rest of their life, but it could be that we could actually take them to a different level they would not have reached. So this book is amazing. Turn Autism Around. And it also started as your podcast title but also of course, and your newest book title like where did you get this title? I mean, is it possible to even turn autism around? What do you think, Mary?
What does it mean to “Turn Autism Around”?
Mary: So I came up with the title when I was taking Pat Flynn's How to make a podcast course in about 2017, and he recommended that the subject matter be in the three or four word title and that was about it, like 3 to 4 words with autism somewhere in there. So I was like literally playing around with different words and how I could, you know, what I could come up with. And I came up with Turn Autism Around and I searched and knew that the URL, the website turned autism rom-com was available, which is really important when you're trying to name a product. And so I was like, okay, that's great for the title of the podcast. Now I have gotten some pushback for it. You know, some adults we've had many adults on the podcast with high functioning autism or autistic adults. So I really value what adult autistics have to say. The people that have been on my podcast don't have a problem with the title, but some adults with autism and some professionals and even some parents of older kids who are severely impacted, they don't necessarily love the title because like, what do you mean? And really all I mean is making things better, assessing the child's or adult's strengths and needs, making a plan using a four step approach which is assessment, planning, intervention, or teaching and evaluating using easy data. Those four steps are the scientific method. So everything is based on science, and it's also based on my background not only as a behavior analyst, but a nurse and a mom and an advocate. And so I still like the title, the title of the podcast, which turned into my online course title for toddlers, which turned into my book. And I did go back and forth with my publisher, Hay House, about the title. Did I definitely want to have autism in the title because there's been other books, Let Me Hear Your Voice and Kate Swenson, who we had on the podcast, she wrote Forever Boy. And sometimes when you don't put it in the main title, it does better. But I'm more of a direct person. And really the book Turn Autism Around is based very heavily on the course. And we also after I wrote the book, I redid the course again for about the fifth or sixth time to really make it as. Step by step. You know videos. And then a community that supports parents because even if you read the book cover to cover you watch the course from start to finish in order. You watch it three times, you're still going to get stuck at different points and still going to have questions. And unless you have a community to really help you fine tune your procedures, you're probably going to not do as well. So I'm sticking with the title and that's my answer and my goal for Lucas, who remains impaired, he's 26 for Lucas, your kids Vikram, even my typical son, all the kids out in the world. My goal is the same. I want them to be as safe as possible, as independent as possible, and as happy as possible, and to reach your fullest potential. So titling things is kind of hard and I don't see how that goal of just helping kids reach their fullest potential could not resonate with people. So, you know, people that are critical of the title of my work really haven't, in my opinion, experienced what I have to say because I think I'm a pretty reasonable kind of person.
Vikram: Now, you definitely are Mary!
Mary: I might be a little biased, though.
Vikram: No, not at all. Mary, I think you're being too. Yeah. You might be overthinking this because and the reason I say this is because your title of your book, Turn Autism Around, gets every parent who may be struggling with the diagnosis of autism, it gives them something called hope. And that is something that will inspire them and propel them from where they are being overwhelmed to turning things around for their child. And it doesn't mean turning autism specifically as a syndrome around. It does mean turning their mindset around, turning their mentality and how they tackle this thing that, you know, just seems unmanageable. So in reality it is turning the parents' mindset around. It's turning their child's life around for the better. And like I said, there's nothing better than being able to see gains being made in your child's improvement. And I'm experiencing that firsthand in my child's life. And there's nothing that gives me more joy than being personally involved in his development and seeing him flourish and grow as a result of your course. I think it's phenomenal. So stick with the title. I think it's a great title and I think it's a winner. And so, you know, one of the exciting things is that this is podcast 200. And so when you invited me to come and do the interview with you, I was thinking, wow, you know, I just joined as a student of yours. And so not to be able to interview you, you know, I've got to say, like, I feel like you're a celebrity for me. We talk about you every single day, almost every meal in our home. You know, people say Simon says, you know, we joke, we say Mary says, you know, whatever Mary says, you know, we're going to do it. And so this is you know, this is podcast 200 and you've released a podcast pretty amazing every single Tuesday since January 2019. You know, and even starting a podcast, maybe two or three years ago was also pretty pioneering as well, you know, and you recently surpassed a million downloads. Congratulations for that. You know, that's a pretty high achievement, you know. So why did you go about starting this podcast and did you expect such an overwhelming response? I mean, tell me you must be getting people from all over the world listening to your podcast. So were you expecting this?
The Turn Autism Around Podcast:
Mary: And we have people that have joined my online community from over 90 countries. We don't have great stats about who is listening per say, but yeah, over a million downloads. That's just on audio. We also produce it on video, on YouTube, on my website. MaryBarbera.com/Podcast will get you to the podcast page with all of the videos you can watch. So if we factor in all the video views too, I'm sure we're in the millions. So why did I start the podcast? I was doing weekly video blogs on YouTube and on my website for like 2017 to 19, and I had bought how to podcast, how to Power Up podcasting, which is a great course. I've learned how to do all of this online stuff, the online courses, how to do a webinar, how to set up a video studio in your home, and how to do a podcast. But I sat on that a little bit. I bought the course, the podcasting course, and then I was a little overwhelmed and stuck with the videos. And then at some point I just decided, I think in the fall of 2018, I was like, Now I'm going to do a podcast. I actually was interviewed by Matt Cicoria on his Behavioral Observations podcast. I think I was episode 12 for him, and he's now at 200 or plus, and he interviewed me and that was my first experience being interviewed and I kind of liked it. And then I realized that I could probably reach more people than I was getting with my videos. So I started, I binge watched the whole course and then I started and you know, in the course of wanting to have a name and learn how to, you know, and then I realized, like he one of his things is like, you can't just come out on January 22nd with one podcast. You actually have to come out with 3 to 5 podcasts. On that day. I'm like, Oh my gosh. Like I already announced the day. Now he's telling me I need at least three podcast episodes to come out. And then as we went, even before we really launched, I found out that a guy that was working for me as a contractor actually did podcast editing and everything. So he's been doing all my editing and the show notes page and everything since then. And yeah, so we've managed to reach more people. Actually, it was really great to have the podcast under my belt when I was writing my book and got a publisher for my book, which was a much bigger publisher than my first book. And so the podcast is something that I'm very proud of and I've gotten to meet a lot of people too like Vikram, you were a success story/hot seat. I've got to meet you know, anybody I want to meet in the autism world. I pretty much asked them to be on my podcast and then I get to meet them and network with them. So it's exciting.
Vikram: Yeah, definitely. So podcasting for sure opens up doors and also opens up horizons, gives you new perspectives, you know, from your standpoint. And you can feed that back into your online content and online course and then, you know, benefit all the parents who are going through the course. So it really, really works well. But I sense your focus has changed over the years, you know, from school age children now towards more younger kids. Is that the case? And if so, why are you focusing more on toddlers? You know, smaller kids?
Young Children with Signs of Autism and Early Intervention:
Mary: Yeah. So my first book, The Verbal Behavioral Approach, and I want to make this little announcement for those that have been following me for a while. The verbal behavior approach came out in 2007 and it just came out in Spanish. It was like the 17th translation. Turn Autism Around just came out in Spanish. It's the first translation. But the reason I pulled that up is because the Verbal Behavior Approach book was 2007. I only went online in 2015. So from 2007 to 2015, this book, The Verbal Behavior Approach is what put me on the map. And I was working for the Pennsylvania Verbal Behavior Project, which was school aged for the most part, and that was from 2003 to 2010. So a lot of what I was doing every single day was working with teachers and speech pathologists and paraprofessionals and school bus drivers and cafeteria aides and parents of all older kids. Now, we did have some three year olds, some 3 to 5 year olds, but I tended to be assigned mostly to the school age population. And so a lot of my quote unquote raving fans in the online marketing space is like who will buy anything from you and who you know is already there. And it was all parents and professionals working with older kids. And so my very first online course in 2015 was called Autism ABA Help Online Training for Professionals and Gung-Ho Parents. And yes, because not the parents didn't need as much training as the professionals back then. It was like I was going in, rolling up my sleeves, mostly working with professionals. And so that course is now the early learner, of course, which is part of our verbal behavior bundle. And then I created the intermediate learner course in 2016 and then in 2017, really because of my experience with. My own experience being in denial. The rate of autism at that point was instead of one in 500, it's one in 50 now. It's one in 44. Or give or take. So really, not only do you have denial, you also have huge waiting lists and all kinds of issues. And so I really wanted to keep my early learner intermediate learner courses going, which was then called the Verbal Behavior Bundle. And then I wanted to kind of consider myself kind of near the top of the mountain. I was like, I'm going to leave you guys here. I'm going to still be here, but I need to go back down to the mountain, to the bottom, and I need to scoop up all the parents who are in denial, who are waiting, who are worrying, because the best thing you can do is treat autism signs of autism as soon as they appear. And the right techniques work for kids with speech delays, for kids with sensory processing issues, for kids with any delays. And the other thing that happened in 2010, I left the verbal behavior project in Pennsylvania and finished up my Ph.D. in leadership. But I also, for the next five years, went to the birth to three program in my county, which was for 1 to 3 year olds. And then I'd work with some of them until they were five or school age. And I basically applied everything I knew from working with Lucas and all the school age children and created a very easy step by step system for little kids, for their parents, for their early intervention providers. And so I had all that experience and was grateful to many of the parents who right from the start gave me video permission while I was in there to document not only for themselves and the professionals, but also to allow me to share their videos. And so Vikram, you've been in my courses, you know, like every lesson has multiple, multiple videos where I can demonstrate exactly what to do. If a child makes an error or a child throws a tantrum in the middle of it, my approach is very positive, very child friendly. So that's why I shifted to the toddler course in 2017, and I really had no plans to write a book. But I am in a mastermind group through Jeff Walker, who's my online mentor. He's been on the show. We can link that in the show notes. And he wrote a book that changed my life called Launch in 2014. I read it and it changed my life and I wrote a life changing book for people. And so when I was with him one day in 2019, I said, Do you think I should write another book? And he's like, Yes, you should. And so just like I created a podcast, just like I created my course, I was like, okay, let's make this. And so that's where what led to my second book Turned Autism Around. And yeah, so that's kind of what happened briefly, as brief as I could be.
Vikram: Great. Mary; That sounds really, really amazing. And I'm so excited that, you know, this book is making such a difference in so many people's lives. Now, you recently launched a software application, and I know you're very excited about that. So can you tell us a little bit more about it?
Brand New Assessment Software:
Mary: Yeah. So I decided based on some interactions I've had with people in my business mastermind, my online business mastermind, that coming up with the software would really move the whole field forward, move my business forward in a lot of ways. And so I took the one page assessment that I created more than 15 years ago. It's actually a five page assessment in the back of my first book, and it's a one page assessment in my second book I took that made it a lot more quantifiable. Got a software company, invested a ton of time and money over the past 6 to 8 months now, and we have launched it. Vikram, you know because you're a member of my online course and community, so we are beta testing it at the time of this recording. It is going to come out either it just came out or it's going to come out. And you can look at the show notes, MaryBarbera.com/200 to get the link. We are going to do the software which is an assessment where you take 10 minutes. You fill out all the assessments in terms of safety, eating, sleep, potty training, dressing, grooming, language, expressive and receptive language, imitation, matching, social skills and problem behaviors. You're going to do that quick assessment in 10 minutes and then it's going to spit out a little bit more than one page assessment. It's also going to give you scores in terms of self care, language and problem behavior. And I'm hoping that once we get it really tested and once we get the scores refined and things like that, that eventually we could have a validated tool. Eventually we can start to measure pre and post gains of members of people doing different things. And so I am really excited about the software. We've had some tech glitches, glitches, no doubt. But I do see that as a really important thing that we've rolled our sleeves up to do this year to get that out. And it's definitely going to be free for the first thousand people. And then we'll see. It might be free forever, or we might find out that just giving people free and then having to spit out the assessment isn't enough. And we might put it within a mini course or only for members of my full course or whatever. But I look at this not only to help individuals get an easier way to find their starting point or find out where to restart, but also to collect data so that we can start to say, okay, four year olds with a diagnosis of autism, you know, 65% of them are picky eaters or 45% of them have sleep problems and begin to correlate and produce research that could you know, I even envision like maybe a whole research arm of my business.
Vikram: That's incredible. So, yeah, I really see where you're going with this. And I really believe it could benefit, you know, not just the work you're doing, but also back into the parents' lives and see, you know, how to best use research. You know, live research from parents is the answer to these questions in your survey. And it's going to be pretty amazing on the research side of things, you know, so, you know, so definitely the future is looking bright for turning autism around and for the online course you've created. And when it comes to parents and as they're listening in today, what are the top three things you'd recommend for parents of a young child with a diagnosis of autism or a toddler who may start showing some signs that could be related to autism?
Top Three Tips for Parents:
Mary: Yeah. So the subtitle of Turn Autism Around, the book is An Action Guide for Parents of Young Children with Early Signs of Autism. So I really am talking a lot more to parents of young children who don't even have a diagnosis. Half of our members in our toddler course, for instance, don't have a diagnosis for their child when they join and introduce themselves. So I think you want three things. First of all, don't wait. Don't wait for a diagnosis. Don't wait for things to get worse. Don't wait till they're three or until they're two or for their 18 month visit. If you see delays, learn more. At least search, marry, autism plus whatever you're concerned about. If you're a wife or husband in denial, you can search, marry autism denial. If you have excessive tantrums, you can search, marry autism excessive tantrums like there is a video blog for you that is meant to solve your immediate need. You can read the book. So first. Don't wait. Second of all, learn, learn all you can. You know, in my book, I reference being the captain of the ship. And really what that means is being that gung ho parent who's going to show up for webinars for professionals or show up for things that you're like, Why should I know? You know, if I have a car that is broken, I don't learn how to be a mechanic. This is your child. And the more you learn, I think the better your child is going to do in the long term. Whether it's autism or not. So. So. Don't wait. Learn more and get some help. If you have family nearby, if you have neighbors, if you're a part of a church and you can get volunteers, you can go to Boy Scouts or Girl Scouts and see if they need credits. You can go to a college, you can get a mommy's helper. Or a lot of the techniques that I talk about, you don't need a specialized professional. You can get a ten year old sibling and you can teach them how to engage your child, how to be positive. So I think those are my top three for parents of young children.
Vikram: Yeah, 100%, Mary. And, you know, one of the pivotal things of your online content is something you call table time, right? And that makes it so fun for the kids to learn and grow and develop. You know, so it's fascinating what you're doing through that. And I've seen, you know, like I said, improvements in my own son's development, which is quite amazing. So, Mary, do you think there would be different recommendations for parents of older kids with moderate to severe autism? What do you think?
Recommendations for Parents with Older Children with Autism:
Mary: Yeah, I actually do because if you have an older child with moderate to severe autism. All of my resources are still appropriate. Like really the book, even though it's an action guide for parents of young children. If you are still struggling with eating, sleeping, potty training, you know, going to the doctors, dentists, haircuts without a fuss, like problem behaviors. You absolutely need to learn more. So that is, don't wait for a diagnosis. That is not really a recommendation because if you have a child with moderate severe autism, they're going to be diagnosed at that point. But learning more still, you can become the captain of the ship. It's never too early or too late to apply these principles. Even if you have an adult son or daughter who is experiencing talking tantrums. Now, I don't have an adult program. I probably won't have an adult program because I've really shifted my focus towards meeting the needs of young children where we can make the most progress in the safest way. But as your children get older, they're going to get bigger. So a flop to the ground is not going to be an easy thing to fix. So learning more, becoming the captain of the ship, stays stable as my recommendations. But you are going to need to collaborate with professionals. You are going to need to collaborate with schools and services. And things are not going to be perfect and not that I want you to, you know, lose hope. But I wrote a paper when I was getting my PhD and I do think that hope should shift and does shift in most cases. You know, when the child's six or seven or eight, if they still have moderate to severe autism and are still struggling not to say that their life is going to be a disaster. But, you know, somebody said to me once, like, well, if you want it done a certain way, when I was in my second due process case where Lucas, when he was nine, like, why don't you just homeschool him if you want it done a certain way? I don't want to homeschool. That's your whole life. Like, that would be my whole life. I wanted to do other things and I don't expect perfection. But I had to advocate hard. I had to collaborate hard. And I think, you know, sometimes when you are still in that mode of I need to do it myself, you know, this is life or death at age eight or older. It's not life or death that you provide. X, Y and Z. You know, this kind of thing. It's like your child only has one life, but so do you. And so do his siblings. And so does your spouse if you're married. So not that I would lose hope or stop doing things, but I would kind of change my mindset like, okay, we don't need to be in first gear constantly. We need to solve the real functional issues, the flopping to the ground, the sleeping, the eating. You know, we need to. You know, I see parents of older kids sometimes get into this. They're hyper focused on articulation or vocal language. When the kids are overturning desks at school, that is more of a priority. You know, we have the verbal behavior bundle course. We have lots of videos now. And really all of my stuff is appropriate for kids ages 1 to 5 chronologically and or developmentally. And so Lucas, who's 26 years of age, still falls into that category. So kids with moderate to severe autism still need help, still need prioritization. And their parents still do. Could and should, in my perspective, become the captain of the ship. But at the same time, you only have one life, so don't get totally stressed 100%.
Vikram: That's really, really great advice. You know, what about the professionals who may be tuning into today's episode? Now, what are your top tips for them?
Tips for Professionals in the Autism Community:
Mary: Yeah. So one of the tips is, you know, you're a professional or you're going to be with the child for a year, maybe three years if you're an SLP and a school district for that school, but you're in their life for a fraction of the time. The parent is the one there. And if they are and I understand parents have different interests in being involved in everything, but if you have a parent that wants to be involved, don't shut them down. You know, there may be only one seat at the IEP table of eight people total, but they should have 50% say at least. And you should be holding them up and really supporting them. So really remember, your role is temporary. Their role is long term. So collaboration not just with the parent, but everybody else at the same time and finally help them advocate. I know sometimes your job is on the line, like you can't tell them that they should be demanding more or, you know, connect them with other parents who will tell them, find a way, send them to a blog, say, you know, Mary, autism plus fighting, you know. Have you taken a look at her stuff? Have you thought about joining her online course in community? Maybe you're a professional out there that's listening that could actually get funding to help them join the online course and community. There's a ton of ways to support parents, and I think you're just in a pivotal role. And the fact that you're listening to this podcast makes me know that you are, you know, my kind of professional, that we really want to all raise each other up and climb to the top of the mountain together.
Vikram: Yeah, 100%. And we definitely need a lot of good professionals out there, especially for parents like myself. You know, you're working with a team, whether it's an SLP or an O.T. and, you know, many other people. It could be even a behavior analyst in the home as well. So, you know, there's a team as a team work effort. And so, yeah, the role of a professional is really, really vital. So Mary, as we get close to the end of podcast 200, we've covered a lot of ground from your history of how you fell into autism, into the world of autism, how you then became a bestselling author, a content creator, and now the future is looking bright. And, you know, for myself as a parent, I'm learning so much through your content and through your podcast, you know, but this is a question you've asked me and I've asked every person who's appeared on your podcast, and you end it the same way. So this one is not going to be any different in a part of your podcast goals are not just to help kids, but to help the parents and professionals be less stressed and lead happier lives. So what are your stress reduction tips for parents or maybe even professionals who are tuning in?
Mary’s Stress Reduction Activities:
Mary: Yeah, and I don't have anything great like I don't meditate, I don't journal, I try to exercise a couple of times a week with a personal trainer, but I do enjoy and usually like to get out for walking. I have a beautiful park behind my house, so I walk whenever it's nice out and I usually walk with my sister or a friend and I like to talk. And so a lot of people that I've interviewed have said they like to be quiet, you know. But I work at home all day by myself, pretty much. I have online meetings. So instead of, like, texting back and forth, I'd rather talk to somebody even on the phone or through video chat or in person. So I am social and I like to get out and talk to people. I also like to go to the beach and I like to just hang out. And one of my kind of bad habits is I do watch a fair amount of reality T.V. and I know that sounds completely nuts when I have a PhD and I am having, you know, I am on a huge mission to turn things around for people around the world and to really change the autism world in the future. And so the fact that I watch reality T.V. is kind of surprising to a lot of people. But to me, it's just kind of in the background. It's enjoyable to just watch some of this stuff and go, Wow. But also get how, you know, that was part of my tips for people is like the more help you can get, the more time you'll have to do things for yourself and if you want to work and and contribute to the field, then you're going to have to have some help along the way. So. So those are my tips. So I don't I don't think that they were as amazing as some of the guests that I've had on have given me really great tips. And it's like, wow. But I think we all relieve stress in different ways and. Right. So thank you for asking me. And, and thank you, Vikram. As we wrap up, this has been great. Hopefully you listeners out there have enjoyed getting a glimpse. I did do podcast number one with, you know, kind of my fall and 15 lessons I've learned. We can link them in the show notes and hopefully I didn't repeat a lot of stories that you have already heard already. But, you know, sometimes even when I go to marketing conferences and things or verbal behavior conferences, sometimes hearing the same thing with a slightly different story or a slightly different anecdote really makes a difference. So thank you so much Vikram, for being here, for turning the tables and thank you listeners for 200 episodes of your listening, your commenting, your sharing and I look forward to episode 300, 400. and 500 hundred. And so thanks again.
Vikram: Thank you, Mary. That's been so awesome. Thank you for this time. I know it's going to be a blessing for whoever listens.
Mary: If you're a parent or an autism professional and enjoy listening to this podcast, you have to come check out my online course and community where we take all of this material and we apply it. You'll learn life changing strategies to get your child or clients to reach their fullest potential. Join me for a free online workshop at MaryBarbera.com/Workshop where you can learn how to avoid common mistakes. You can see videos of me working with kids with and without autism, and you can learn more about joining my online course and community at a very special discount. Once again, go to MaryBarbera.com/Workshop for all the details. I hope to see you there.
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