Tony Mantor: Why Not Me the World
Autism is a complex neurodevelopmental condition that affects millions of people worldwide.
It is characterized by difficulties in social interaction, communication, and repetitive behaviors.
Although autism is becoming more widely recognized, there is still a lack of understanding and awareness surrounding the condition.
As a result, many individuals and families affected by autism struggle to find the support and resources they need.
Why Not Me The World podcast aims to bridge that gap by providing valuable information and insights into autism, fostering empathy and understanding, and promoting acceptance and inclusion.
Nashville based Music Producer Tony Mantor explores the remarkable impact his guests make by empowering their voices in spreading awareness about autism and helping break down the barriers of understanding.
Join Mantor and his guests as they delve into the world of autism and mental health to explore topics such as diagnosis, treatment, research, and personal stories.
Together, we can create a more informed and compassionate society for individuals with autism.
Tony Mantor: Why Not Me the World
Rose Griffin:The Path to Inclusive Support and Autism Awarenes
Explore the transformative journey of Rose Griffin, a dedicated speech-language pathologist and board-certified behavior analyst, as she sheds light on the evolving landscape of autism awareness and support.
From a serendipitous high school career assessment that led her to speech therapy, Rose reflects on her 20-year commitment to empowering individuals with autism, especially those who are non-verbal.
Her work at the Cleveland Clinic's Learner School has been pivotal, and she shares her insights on the increasing awareness and understanding of autism over the years.
Throughout our conversation, Rose and I tackle the intricacies of supporting autistic individuals, emphasizing the importance of nurturing positive relationships and employing child-led methods.
We confront the controversies surrounding ABA therapy, highlighting the therapist's role in shaping its impact.
By sharing poignant stories and professional insights, Rose illustrates the need for a balanced approach that embraces play, connection, and understanding.
The episode also delves into the emotional experiences of parents and the critical nature of early intervention in shaping positive outcomes.
On a global scale, the discussion broadens to the international support for autism awareness, recognizing the disparities in resources across different countries. Rose underscores the power of online platforms to bridge these gaps, offering crucial guidance to parents and professionals worldwide.
We spotlight the resources available at abaspeech.org, encouraging listeners to engage with a supportive community that shares their journey.
Join us for a conversation about the power of acceptance and understanding in fostering a more inclusive world for autistic individuals and their families.
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intro/outro music bed written by T. Wild
Why Not Me the World music published by Mantor Music (BMI)
Welcome to why Not Me, the World? Podcast, hosted by Tony Mantor, broadcasting from Music City, usa, nashville, tennessee. Join us as our guests tell us their stories. Some will make you laugh, some will make you cry. Their stories Some will make you laugh, some will make you cry. Real life people who will inspire and show that you are not alone in this world. Hopefully, you gain more awareness, acceptance and a better understanding for autism around the world. Hi, I'm Tony Mantor. Welcome to why Not Me, the World. Today's guest is Rose Griffin, a distinguished speech-language pathologist and board-certified behavior analyst. During her senior year of high school, rose took a career assessment that suggested a career in speech therapy. This pivotal moment marked the beginning of her professional journey dedicated to serving individuals with autism and their families. Rose joins us today to share her inspiring story and the evolution of her career from its inception in high school. Thanks for coming on.
Speaker 2:Yeah, no problem. Somebody did an audit of my podcast and they said your podcast is one that I should be on. That's how I found out about your podcast.
Speaker 1:Wow, I really appreciate the referral from them. That's awesome. So when did you decide to go into therapy?
Speaker 2:Actually, my mom gave me a career test when I was a senior in high school and it said I should be a speech therapist. And then I just I shadowed a family friend and that was it. I became a speech therapist. I never took any classes that I didn't need to and I knew I wanted to do that. And you have to get a master's degree. So six years of school, yeah. So immediately once I entered undergrad yeah, I just love the field. I've been doing it over 20 years and I still really enjoy it.
Speaker 1:I think that's awesome, that you knew what you wanted to do right from the very start. I've had friends that have gone to college learned their craft the best they could, followed the books.
Speaker 2:Yes.
Speaker 1:But then they found that the books just didn't really work out the way they thought.
Speaker 2:Right.
Speaker 1:How did you find what you learned in college about autism, special needs, etc. To relate to the everyday world?
Speaker 2:Yeah, no, that's a great question. I think you know, when I was in school the incidence rate of autism was 242, maybe more than that. So we really didn't talk about autism a lot. I didn't have a specific autism course, I just I remember when I was in school and doing externships I worked at a public school and we had a lot of autistic students and those are always my favorite students.
Speaker 2:So then when I got out my second year, then I worked at a place called the Learner School, which is part of the Cleveland Clinic, and it was all autism. Every single learner was autistic and I just that's always what I've wanted to do, so I just never looked back. Obviously, as a speech therapist I work with a variety of clients, but really for the most of my clinical life I have specialized in helping autistic learners and I've worked with all different types of students, but I'm really specializing, with my business ABA Speech, of helping kids who don't have a way to communicate find a way to communicate, whether it be verbally or with an augmentative communication device. Yeah, that's always been my passion.
Speaker 1:Well, that's a great passion. Were you surrounded by anyone in your past that was autistic or that led you to the path of what you're doing today?
Speaker 2:No, not at all, not really of what you're doing today. No, not at all, not really. And I mean, I don't not that I'm aware of. Looking back on some kids in high school, I think there's one kid who I don't know if he had a diagnosis back then. He is autistic and I'm kind of friends with him, like online on LinkedIn, you know as an adult now, and he's mentioned like, oh, I think it's so cool what you're doing and all that with ABA speech, but no, not really, not really, no.
Speaker 1:That's very interesting to think that back in the early 90s autism wasn't even really talked about. We had ones that were called the weird ones. Now it's much more prevalent than it's ever been, so it's been continually changing. I'm curious how have you seen it change from when you started to where you are today?
Speaker 2:Yeah, I mean the incidence rate has changed a ton, so now I think it's one in 36, I believe the CDC has said and we used to say it's four to one, boys to girls but I don't really use that statistic because there's a lot of talk that girls are just not diagnosed as early because of a lot of different things. There are characteristics. I've had a lot of autistic females on my podcast who were diagnosed a lot later in life just because of a variety of reasons and so for that, and I feel like a lot of people like I did never took a course on autism, so you're really kind of just learning as your caseload evolves, right, you're in a school and maybe you're in a specialized program and I always sought out those programs where I would be working just with autistic learners, where I would be really helping kids who did not have a way to communicate, whether they be 5, 10, 18. That was really what I was passionate about, but I really learned on the job.
Speaker 1:Yeah, how do you approach it? I mean, there's been a lot of for lack of a better word controversy about ABA therapy.
Speaker 2:Yeah.
Speaker 1:I was talking to Temple Granite about that, yeah, and she said it simply came down to the person that's doing the ABA therapy whether they're good or bad. So with the controversy that was out there because of the ABA therapy going on and off, how did you address that?
Speaker 2:Yeah, in real life, people love the fact that I'm both a speech therapist and a BCBA. There are about 400 to 500 people in the entire world that are both, so it really allows me to talk to both groups. Yeah.
Speaker 1:That's great. So can you explain the difference to the listeners?
Speaker 2:Yeah, yeah. So a speech language pathologist really learns. Our scope of practice is really broad. We could help people who have swallowing disorders. We could help people who have had strokes, feeding concerns, language issues, autism is just one small piece of really what we do within our scope of competence and practice. And for board-certified behavior analysts that's a totally different profession and we can do lots of different things.
Speaker 2:Really kind of helping people in the autism world is like increased functional behavior. That is important and what I specialize in is communication. And then if we do have students who are engaging in potentially unsafe problem behavior where they can't go to a public school or their grandparents can't come over, they can't go to church, trying to talk with the client, the family and decide like, well, why is that behavior occurring? And usually not always, but you could see like if we are able to help a student increase their ability to communicate, we usually see that behavior trending down, because oftentimes kids will not have a way to communicate because they haven't been taught, they haven't had the right intervention, it's been hard to reach them and then they're navigating their world by using behavior.
Speaker 2:I love Temple Granite. I heard her talk when I lived in Austin, texas and I mean, I think it's with a lot of things it really does. It's just like doctors, it depends on the provider. You could work with a doctor who's awesome, who makes you feel really cared for, and then you could work with somebody who you feel like you're wasting their time because they need to get onto the next room, right. So it depends.
Speaker 1:What Doctors with no bedside manner Tell me? That's not so.
Speaker 2:Yeah, exactly Right. So it depends. I mean, I try on my platform at ADA Speech to show how you can provide naturalistic instruction for autistic learners and I do think applied behavior analysis is kind of having this rebirth where we're talking about. It's always been in the research and literature but a sense, you know, child led therapy, not compliance based, although sometimes you know, sometimes compliance as far as following directions and things like that. I have a friend who her friend and her autistic son died in a house fire because just within the past five years because he wouldn't leave the house. So sometimes compliance for safety and medical issues is something that is still important.
Speaker 1:Yes, that's so true. When a parent comes to you, they have just found out that their child is autistic. Their mental health is just all over the place. They're really afraid. They just don't know what to do. They've tried things that just haven't worked Right, or maybe it has to a small degree. When you meet them and meet that child, what is the first thing that you do to start that relationship so you can build their life and put it back together?
Speaker 2:Just have fun and just play and see what they like to do, find out what they love and enjoy and just try to be present and kind of parallel play is really just kind of being with them. Bubbles are if it's a younger, you know, child. I love bubbles because they go away and then you can blow them. Music, some kids like books, but for sure bubbles play. Just seeing what the kid loves and enjoys, especially if you're seeing somebody in their home, that's a whole other dynamic.
Speaker 1:Sure.
Speaker 2:Where they're at home. They have all their things and it's nice because you can talk with parents. I also work in a school, so that's a different atmosphere where you don't get to see the parents as much.
Speaker 1:Right.
Speaker 2:But just trying to be somebody. When they see me that they are like oh there's Miss Rose, she's fun, she gets me, and so just having a good time. I have three kids of my own, so I feel like I'm good at all that stuff.
Speaker 1:That's great. Is there any autism in your family at all?
Speaker 2:No.
Speaker 1:What do you do when you get a child that's a little older, maybe preteens or teens? That's a whole different dynamic for them. Teen years are tough for a neurotypical child, but you add autism to that and they're trying to figure it all out and fit in. It makes it really really tough sometimes. How do you approach that?
Speaker 2:Yeah, I feel like every learner is so different and I did work at the middle school, high school level for 10 years, so I really have a decent amount of experience with that. I think some kids they're just, you know, they're in a really supportive environment. They are maybe on grade level academically. I'm thinking of one kid and they do some autistic type you know stereotypy with their hands, but they don't really doesn't bother them, doesn't bother anybody in their atmosphere, so that child may not even need therapy. You know what I mean.
Speaker 2:Versus somebody who maybe does have support needs in the area of social skills, I talk with that student and say you know, just think of me as like your social skills coach because, just like you said, middle school and high school, those are really nuanced times for social skills for all people and so to have somebody to guide you. And what's hard about that is there's no curriculum. There's a lot of social skills curriculum but there's not going to be anything that comes out that's individualized for your student. You know, when I was working with kids at that age level, I used a lot of video modeling where we take a video of me maybe engaging in the skill like answering a question in class or during COVID. You know, I had a kid who needed to practice asking for a mask break and all these things that are super, super specific. So I always try to use video modeling, which anybody can do with a phone. You just take a video of the skill and then you show it to the learner and you practice.
Speaker 1:Yeah, that's awesome. You just mentioned a home scenario. I spoke with an ABA therapist. He went into a person's home. Yeah, he immediately assessed the situation for his own safety then thought to himself this might not work. Have you had situations like that?
Speaker 2:Oh yeah, I mean I worked in private placements where the students I always had to have somebody with me because it was just unsafe for me to be by myself if a student had unsafe problem behavior. So students like that are usually working with a speech-language pathologist, a board-certified behavior analyst, families very involved and oftentimes students that are at those outside placements. That's their least restrictive environment because they can't be educated appropriately or safely in a public school. So they just have really robust intervention where everybody's on the same page, with the idea being we really want to help that student, not engage in those behaviors and understand why that's occurring. And then always there's a tie to communication. There's just almost always a tie that there is support needs in the area of communication. So how can we beef up that communication? And really communication is something that in those specialized programs usually is just worked on all day, every day, because that really is usually the most important thing for students. They're frustrated and they can't communicate what they want to and it's hard for them. Yeah.
Speaker 1:Yeah, I can understand that for sure. You mentioned earlier that males are diagnosed about four to one. I've heard that the reason why females aren't diagnosed quite so early is because they're masking, they're trying to fit in, they're trying to be socially acceptable. Sometimes that works, sometimes that doesn't, and most times it doesn't work out as well as they thought because they still get bullied or looked at and it's really hurtful. How do you approach someone like that that is just so tender and needs help, yet is still undiagnosed?
Speaker 2:Yeah, I think there's a lot and and I really can just speak mostly from because the kids that I've worked with individuals have all had a diagnosis, but the people that I've had on my podcast that are females that have been diagnosed later in life. We talk about masking. So I think that talking about masking, understanding that giving a name to something that people were probably just doing and that it has a negative consequence, and I think that there's just so much more information out there which can be good and which can be bad, you know, can be like information overload, but for people who are dealing with that, you know, just being in a supportive environment, right, it's like kind of doing some coaching with whoever's in the environment too, right, peers, and depends on your community, right, how inclusive it is and where you're at at baseline and if there's any other autistic students. It just really depends on how big your school district is.
Speaker 2:I've worked in big districts and small districts and sometimes the small districts are just hard, because you may not have any other kid who has an interest in Dungeons and Dragons or something that's really specific, and so you know, because we always say, like you, really it's nice to have one friend. Right, you just need one friend. But sometimes when you're thinking about like how can I facilitate this? Or this student seems lonely. Sometimes in smaller districts that is hard because the student may have a special interest and because it's a small area maybe nobody else has that. But with online that is a little bit easier to connect with others and things like that that have similar interests.
Speaker 1:Yeah, online definitely has its good points and its bad points. From what I see, the online problem is the labeling. They don't want that label, but yet they need that label to get the support. How do we create that bridge to labeling of autism so that they get it and it ultimately helps their lives moving forward?
Speaker 2:Yeah, I mean I think it's just all about autism acceptance. I mean I think we used to call April Autism Awareness Month, but maybe now it's called Autism Acceptance. I may be saying that wrong, but you know I always say every single day is Autism 101 day at ABA Speech. So I just always share, like. If you look on my Instagram ABA Speech by Rose, I just share. You know I share from autistic adults.
Speaker 2:I'll share information about early signs of autism and it's not to scare anybody. It's just to say, like you said, if your child's autistic, they may have support needs and why wouldn't you want to give your child what they need, like why would you want them to struggle with? You know toileting or speaking or walking, all those things that every child is going to be different. And just because you have autism doesn't necessarily mean you need any services either. You know you could have an autism diagnosis, but if you're doing fine in school, it doesn't have an adverse impact on your educational performance. You may not have any services.
Speaker 2:You know, like Stephen Shore said, if you met one person with autism, you met one person with autism, and that really is true. So I feel like now there is a lot of controversy online. If you spend too much time online, like I probably do With, that is good and bad, right. I do think autism is just more in the forefront and it's just like oh yeah, you know that. Yeah, he has autism or they're autistic. It's more of like a cultural thing too, I think.
Speaker 1:Yeah, I think the biggest issue is simply it's misunderstood. It's like you said April is Autism Awareness and Acceptance Month. The slogan I use for my podcast is autism awareness, acceptance and understanding. I believe that people can be aware of something, they can accept it because they're aware of it, but until they fully understand it, then they never comprehend what the other people are actually going through.
Speaker 2:Well, and everybody's, every autistic person and every autistic person person's family experience is going to be so different, because every person's so different. You know, you might have somebody who is on grade level academically or gifted, but is struggling with social, emotional or social skills, and you may have somebody who is not yet speaking, is not able to go to the restroom on their own, and it's just everything's so different. So, yeah, I think if we come from a place of trying to listen and understand, then that makes us better clinicians. That's why, on're between three and six, what are the steps you?
Speaker 1:take to help them communicate so that they can learn, grow and then, down the road, keep our fingers crossed, become verbal.
Speaker 2:Yeah, something that we really focus on a lot in the field of speech therapy and ABA is called joint attention.
Speaker 2:Just really in layman's terms, it's shared engagement. So what can we do together that would be fun, so that you want to engage with me, not because you're going to get an external reinforcer like a piece of candy or something like that, but we're just going to do this activity because the activity is actually fun. And so there's lots of behaviors that are like pointing and showing and eye contact and things like that. And so the way that I talk about that is a three-pronged approach of using books, music like and I love music that has motions because imitation like Wheels on the Bus, another really good one and play so like Bubbles or Simon Says, just so we're doing activities together and we have seen once we build that shared social reciprocity, then that really is going to help our student then find a way to communicate with the world, and then, once the student is able to either use pictures or a device or their own verbal speech, then we just keep working on more advanced skills until the student is as independent as possible with communication.
Speaker 1:That sounds like such a great process to do. Now you've got a set of parents. They've tried everything they could. In their mind, they think that everything they've tried is a total disaster. It might not be, yet their perception is that this just isn't working. There's nothing that's going to help my son or daughter. Have you run into a situation where you had parents like that? You worked with a child, built that relationship. Things actually started getting a lot better. They could see it. Now they've changed their mind completely and it's turning into a success story that can carry forward for a long time.
Speaker 2:Absolutely. Yeah, absolutely. You know, I had a student that I worked with in a specialized program. He was 10. He had a beautiful augmentative communication device like iPad with a software on there set up, but he did not use it at all. He could not go anywhere. He could not have any other classmates in his room because it was unsafe. He had to have two people working with him because it was unsafe to have one. He couldn't go in the community, his grandparents couldn't come over, and so he was 10. And so we just really, inch by inch, systematically worked on him using his device by himself, and it was cool. I worked with that student for three years. We saw like a major decrease in his unsafe problem behavior. He can now work because I still know his teacher. He can now work with one person. He is in a classroom with others but kind of has his own space, and even towards the end when I was working with him, he was able to independently use his device and he was able to go into the community and order Dairy Queen on his device. I used to show videos of him His parents allowed me in some of the trainings that I did and I think that you nailed it on the head.
Speaker 2:It's like sometimes, especially if there's a kid who is not yet speaking and they don't make any progress in public school, and then they start to go aggressive. Let's say they're eight, nine or 10, and then they've never been able to communicate, the school team doesn't know how to help them, and then they turn 10 and they're aggressive towards staff. This is something that happens all the time, and then the school district may say you know what? I think you need to go to a specialized program, to this really robust intervention. And that is giving the parents hope like, wow, these people really get my child, my child's, able to go to a school where they can relate to others and they're really, really learning. Some public school districts are great and others just have never met a learner that has needs like that, and so it's this delicate balance of knowing how to support all students.
Speaker 1:Absolutely. I mean, when parents first learn of their child's autistic diagnosis, some tend to be really afraid, and fearful because they think it's a death sentence and it's really not. Now they have taught us that they can do so many great things and become just anything that anyone would want them to be.
Speaker 2:Right, absolutely, absolutely, yeah, with the right intervention and support. And I think what's nice about applied behavior analysis, too, is it's covered by insurance. Now, that's why it's grown so rapidly, because every state is covered by insurance. The one part that is nice is that usually it's the insurance mandate of the students getting ABA services that the parent also has to get and engage in parent training, like you said. Support for parents, because as a speech therapist, it's great if I can talk with parents, but it's not mandated by insurance, so it's not a have to. But with ABA it's a have to. It's usually mandated by insurance, which is nice, because parents need support. They need to know what's going on and what's working in therapy and what can be generalized to home.
Speaker 1:Yeah, absolutely, because this is a very complex situation. There could be multiple people within the family. They all have to be on the same page, so they know the good and, unfortunately, the not so good about it, and then, when it's not going so good, they learn how to get it back on track. So is there anything that I've missed that needs to be addressed for people to hear?
Speaker 2:I think we covered a lot of things. I think if your child's not yet speaking and the pediatrician says, well, let's just wait and see, you definitely have early intervention. Every single state here in the United States has early intervention where you can contact your state level organization to get an assessment. I think early intervention, where you can contact your state-level organization to get an assessment, I think early intervention is so important because your brain is just it's ready to learn. So you know having that type of support is important. And then if you have any listeners that are international, I do, I have many.
Speaker 2:There could be speech therapists, that you know. I do international consults in Pakistan and Dubai and London and all different places with parents, because there are speech therapists there and there are BCBAs, but not everybody feels comfortable supporting autistic learners or has that type of experience, and so that's another reason that online is nice, too, where you can reach out to people who you like, know and trust. That could help you guide you on your autism journey. You know.
Speaker 1:Yeah, unfortunately, there's several countries that don't even recognize autism.
Speaker 2:Right yeah, so a lot of cultural barriers too.
Speaker 1:Yeah, there sure is. So how do people find you?
Speaker 2:Yeah, visit me at abaspeechorg. We have a parent membership. We have a parent who does monthly tutorials all about behavior communication and we do courses and there's lots and lots of support. If you're not ready for that, if you just visit me at abaspeechorg, we have a lot of really nice resources that will be a support immediately for you and your child.
Speaker 1:Well, this has been awesome. I really appreciate you coming on today.
Speaker 2:Yeah, nice to meet you.
Speaker 1:Yeah, it's been great.
Speaker 2:Thank you, Tony.
Speaker 1:Pleasure's 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 TonyMantorcom 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.