Mandy Mason joins me in this episode from Perth, Australia to talk all about Autism Spectrum Disorders in Australia. She is a BCBA, CEO and Director of FIT Learning in Australia, and mother of two daughters, one of which has a diagnosis of severe autism. Mandy shares her journey with her youngest’s diagnosis in Australia and how working with her fueled the fire for her passion and involvement in the autism world today.
Diagnosing Autism Spectrum Disorders in Australia
Mandy’s daughter is now 17 but was diagnosed at the age of 20 months in 2006. At that time, Mandy had many concerns and although she wasn’t as knowledgeable about autism as she is now, she knew she was seeing signs and finally found the right doctor after 13 previous. Current rates in Australia show a diagnosis for autism as 1 in 90. Mandy shares her opinion on what’s going on with getting a diagnosis and what to do about treating signs or symptoms even when you don’t have a diagnosis yet. We share the same view, the earlier therapy begins the better.
ABA in Australia
As with many things, you’ll find that processes have many similarities and also differences in different countries. Mandy shares her experience with ABA processes in Australia. The controversy surrounding ABA is just as prevalent in Australia as it is here. We discuss why that is and how proper training for therapists providing ABA is critical for the success of the therapy and the child. Science and training is coming a long way for educating therapists but we have access to more universities and programs here in the United States.
ABA in Older Kids
Should ABA stop after early intervention? Mandy is an advocate for lifelong learning and improvement in her daughter and other individuals with autism. She has found that when tweaking ABA to be age appropriate for her teen daughter, she still sees major progress even now. JuJu is moderately conversational despite having severe autism, and continues to make language improvements as this is the major focus for her!
This was a really interesting and great conversation, as we touch on a lot of things in the autism world we are both very passionate about. Mandy has a podcast, The ABA and PT Podcast, in which she interviews contributors to the world of ABA and Precision Teaching.
Mandy Mason On The Turn Autism Around Podcast
Make their NO your Yes. Just the type of powerful mantra needed for a force of nature; single mother of 2 gorgeous girls (one with severe autism), transformer of lives using the power of the science of human behavior and world-class masters sprinter and record holder. It’s a mantra that drives Mandy Mason (extremely fast over 100 and 200m) daily in her personal and professional life. Who would have thought that a 3-letter word could describe a person perfectly? Personally FIT and professionally FIT, Mandy has a powerful story to tell of transformation and not taking no as an answer. But you will need to be quick to catch her because emails, calls, texting, coffee, even talking, like sprinting, has to be done very fast when you’re on a journey to transform lives.
- How to get diagnosed with autism in Australia?
- Is autism a disability in Australia?
- What does autism look like in girls?
- Is ABA useful for older kids?
- Is IQ important in autism?
- What are autism rates in Australia?
- How to find ABA in Australia.
- Sign up for a free workshop online for parents & professionals
- ABA Therapy Autism Mom: 4 Myths & Truths
- How to Recognize Early Signs of Autism in Toddlers Using MCHAT
- Autism and IQ Scores | Supporting Children with Intellectual Disabilities
- Dr. Rick Kubina: Fluency and Precision Teaching
- Using Behavior Science to Support Children with Learning Challenges with Dr. Kim Berens
- Precision Teaching and Autism | Interview with Amy E. and Kelsey G.
- About – Mandy Mason
Mandy Mason – Turn Autism Around Podcast Transcript
Transcript for Podcast Episode:163
Autism Spectrum Disorders in Australia with Mandy Mason
Hosted by: Dr. Mary Barbera
Guest: Mandy Mason
Mary: You're listening to the Turn Autism Around podcast, episode number one hundred and sixty three. Today I have a really special guest. Her name is Mandy Mason, and we have so much in common. We're both autism moms. She has two daughters, one with severe autism, and her daughter is now 17 years of age. Mandy is also a board certified behavior analyst, and she is the CEO and clinical director of Fit Learning in Australia. She is also a world champion sprinter. So today we are talking all about autism, the rates in Australia, ABA and Australia, autism in girls. The fact that kids like her daughter and my son Lucas, need ABA throughout their lives and how I can look very differently. She is just a wealth of information. I really enjoy talking with her and I think you're going to love it too. Let's get to this interview with Mandy Mason.
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.
Mary: So, Mandy, it is so great to be here with you tonight. So thank you so much for joining us.
Mandy: Thank you so much for having me. I just want to remind you that six a.m. in the morning here is like, I have coffee next to me. If that's OK, I will just take a sip from time to time. I'm an early riser, but I'm very excited to be here. Thank you so much for having me.
Mary: Yeah, I think it's great. So Mandy is from Perth, Australia, and I told her before we hit record that I've been to Australia to speak three times, flew in economy class each way, which was a long flight. And then I also had to Au Pairs, live with me from Australia, and a lot of my online participants are from Australia as well. So I want to talk a little bit about Australia. But before we get to Australia and autism, you have a very similar journey to me, both personally and professionally. So why don't you tell our listeners about your fall into the autism world?
Mandy Mason in the Autism World
Mandy: Yeah, I'm a little bit behind you, but I've followed your journey joyfully and I seem to have a lot more gray hair than you. So maybe I, you know, maybe I took a rougher path. I'm not sure. But yes, I have an older daughter. She was three and a half when we'll call her Juju. That's her nickname, and that's what she calls herself. She was, you know, I really different baby to my first daughter, who was very bright, early developer, early language, you know, all of those things that I just thought were typical back then and normal. And I would probably get so much more joy if I was observing those things now exploratory. And, you know, I just remember my older daughter pulling everything out of cupboards and squeezing toothpaste everywhere. And then Gigi came along, and from day one, she was just different. You know, she was born very quickly. It was a she had a frontal lobe bruising to her brain. So, you know, just from day one, even as she came out, you know, things were challenging for her. She didn't fade properly. She cried a lot. She was always, you know, unhappy. And so I my journey in those early years was, I just remember walking all the time and moving her constantly and living in the laundry with the dryer going. That seemed to be the only thing that would settle her. So I knew there was something different about her, and it took a lot of effort to keep her happy. And I saw, I think I counted 13 doctors before I saw one that said, You know, why are you here? And I? This was when she was about 20 months, and I said, I know nothing about autism, but I'm very scared that my daughter is regressing with autism. And at the end of that appointment, he said, I share your concerns and that was really the start. But I ran, you know, 13, 14 months of age. She started to develop some very typical behaviors that even people that don't know much about autism go, well, you know, line learning objects up, being very upset if things changed on her wanting books read that's the thing I remember most wanting books read in exactly the same way and wanting to have, you know, like objects pointed to in the same way, the same song, sang by the same person at the same time of the day she had. A lot of rituals and routines that stood out to me as being unusual and very different to my first child, so it was really 20 months and I saw a pediatrician and, you know, straight away within minutes she had, you know, confirmed for me that my fears were correct.
Mary: And what year was this Mandy?
Mandy: So she was diagnosed 2006 and born 2004. So, yeah, it was really one of those kids very early on that I think if I'd seen the right person, they would have even been prepared to make an earlier diagnosis. But you know, in Australia, we're very conservative about early diagnosis. And, you know, I scarcely have heard pediatricians say, let's wait another year and see how it goes. Now I say to parents, when they ask me that, I go, You know, if someone said to you, you have cancer, that you possibly have cancer, let's wait and see what happens for another year. You know, you wouldn't, you wouldn't take that lightly. And I feel the same about autism. You know, if there is a chance that this kid has, you know, issues behaviorally or learning challenges, let's get onto it now. Who cares what it's called? Let's get on too early. And so, yeah, I think it could have been earlier, but yet at least by 20 months, I had a very good indication that this is what we were dealing with.
Mary: Yeah, I mean, that is really early, especially to have concerns and thirteen doctors before that. I mean, I know my husband first mentioned the possibility of autism when Lucas was twenty one months and I was the one in denial, I was the one saying, No, don't say that and waiting more than a year to pursue a diagnosis. So I mean, I think, you know, it sounds like her symptoms were more severe than Lucas were time. And I mean, really just depends like he was my first. You had a typical child to compare to.
Mandy: It makes a difference, Mary. I think that makes a big difference because I was like, Hold on, this is different. You know that you get so much crying, you know, all of that exploration and everything that Juliet wasn't doing. And there was, yeah, that I think that made a big difference. And and also the behavior. I mean, I mean, she was whacking her head into the floor if things changed on her or you changed a word of a soul or you didn't draw a cat in the same way, you know, she was bouncing to her knees and on her bottom. You know, it's not things you can ignore. It's like, Oh, maybe she's just having a bad day. You know, this is like, this is 20 months of bad days. So, yeah, it was not something that I've seen other kids. And you know, you know, sure, I'm going to diagnostician, but you know, parents will say, What do you think? And I'm like, Well, I'm not a diagnostician, but you know, I I can. I clearly say that, you know, they're presenting with symptoms at typical with a kid that would get a diagnosis. But you know, Juliette was one of those cases. I remember her pediatrician said, You know, this is why the DSM invented? You know, like, see, she's the reason there is this classification.
Mary: Yeah. And the other thing which I say in my book and my courses is that each child has their personality too and the birth order and everything. And so Lucas was always very calm, quiet. He never had any aggression or self-injurious behavior. He went to typical toddler school by himself at the age of two, you know, so it is confusing, and it doesn't really matter whether the child is going to get a diagnosis or not. There is a lot you can do as a parent, which you know is my focus with my new book Turn Autism Around and my courses and everything. But it sounds like you got it. You got it diagnosed. And and how easy was it for you to get, ABA, or did you even know to look for it?
Finding ABA in Australia
Mandy: Yeah, not easy. I just want to say something to that. You and I have been on this journey a long time and so we can laugh about it. But to your audience, I want you to know that, you know, if I'm laughing, it's because it's for me, that's my survival, and my journey is to see the light in it. And many professionals that I've worked with have reminded me that this has to be fun because it's a marathon, not a sprint. And so, yeah, so for me, if I'm laughing place, I'm not making light of some very challenging, journeys that many parents are on and it's I am very in touch with that on a day to day basis with the parents that I work with, and it's just that my survival is seeing the fun and the light in it and making sure that my teams and my parents can enjoy their lives while also dealing with major challenge. I guess what helped me is that I was a professional and I had worked in a very demanding professional life before Juliette came along like, you know, a shot at a big at accounting firm. If anybody like a finance career where I had worked some serious hours, you know, like 90 hours a week, sort of. And in the 80s. Which in Australia was a massive boom time where we just went crazy and the stock market went crazy, and so it was a time when young professionals worked very hard and you know, so I guess Wall Street times, if that's equivalent is America. And so Juliette became a project for me. And so, you know, when I went out, there was something challenging. But with her, I knocked on a lot of doors and asked a lot of questions, and it didn't take me long. When I started searching autism to find my way to ABA, and so, you know, you only had to get on Google for a few minutes and that was back, you know, 15 years ago to to know that behavior analysis has had contributed to the autism field for a long time. And so I just started calling people like people that I knew that had studied psychology. Anyone that I thought might know. And eventually, I found that LOVAAS had done a partial replication of the UCLA study at Murdoch University. And there are a lot of people who came here and there was an American professor here called Jay Burnbrow, and there was a program in 93. I think it was. And so a lot of psychologists had been exposed to Ebba through that program. And I found one. Now, a lot of them have dissipated by that time because was 2006. But some of them were still practicing in the field. And I found my way to one of them who was working actually in a restaurant home. So he wasn't doing, you know, ABA. Well, he was incorporating, of course. Once you understand behavioral science, you know you incorporate it into. But he wasn't doing early intervention.
Mary: Right, right. Which is different, you know? Yeah, it looks cool, you know, are working in respite homes. It's like, you know, we both have older children now, and it does look different than what should be done for your what? How old was she? Twenty four months by the time? Yes.
Mandy: Yeah, that's right. Well, I think 22 months I managed to to start, you know, I have a video that I can share with you. Of her first nine months of therapy and I did the first session and there was a lot of crying. There was a lot of screaming, you know, I didn't really know what I was doing at all. I had a half an hour with a psychologist and I had looked up online. I'm just going to try this because I can't wait, you know? So I rang him. I got his number. He was in a Red Cross respite home, but not just for autism. It was a general respite home for people with physical disabilities and all sorts of challenges to help parents and get a break. That's all sort of short term, short term respite. And I called him and said, You know, if this has happened to me, I'm on this journey and I wondering if I can come and meet with you or could you come and see my daughter? And he's like, he was still working full time in this job, and he said, Well, maybe I could come and see you next week sometime. And I'm like, Can you come today? Like, That's how bad it was, you know what I mean? It's like I was living minute to minute. My daughter was not to was not sleeping. She was doing sleep refusal. I couldn't get her out of the house or in the car or in a car seat. You know, it was that sort of challenge. And he said, Well, I can come tomorrow and say, you know that he came and he spent a lot of time with me for about two years, and then I started to recruit therapists. So that's where it all began. And for anyone going through that process, you know, that is a very stressful time when you are learning how to make materials. And you know, I do generalization and you realize that there are never enough hours in the day. And while you know that might have stayed, well, 40 hours, you know, it's really every waking hour, you know.
Mary: Autism is 100 hours a week. Yeah, really. And that's why it's so important for the parents to learn, even if you have ABA and great ABA going on wherever you are. I really don't know of anybody that's truly getting like any young child that's truly in a placement that's so great that the parent would be able to just relax and not learn because it's even if it's 40 or 50 hours, there's still an additional 50 hours of waking time. Plus, you need to learn how to prevent things, how to make new goals, how to, you know, treating your child in a positive, child friendly way with using the science is only going to help you both in the future.
Mandy: Well, and you know, I mean, I've met some incredible professionals, but you know, not everybody in the field of ABA is adequately skilled to deal with, you know, your kids challenges. Not everybody is an expert in everything. And so you know you becoming questioning of data and programing in a, you know, in a positive, collaborative way. But going, you know, why are you teaching this skill? Where is that going to lead? How will that show up to me in? You know, what can I be doing to practice that? Like, how could I collect some data that's meaningful to you? You know, that's it takes a long time as a parent to start to ask good questions about what's occurring. And you can waste a lot of time if you don't ask good questions. So you're right, there's there's all of that to learn as well, but it's a. So, yeah, I was I was dealing with all of that, but I think because I'd come from these large projects and been a professional, I guess I put on my project hat and was like, Well, this is just the biggest project of my life times, you know, times a thousand times harder. And I guess I separated that from this is my daughter. And now this is a project. China sounds quite cold, but if you get wrapped up in the grief and the hardship of it all, you know, you can lose time. And so that was how I dealt with it anyway. She became my biggest project.
Mary: Yeah, I like that. So the autism rates in Australia, I did a little digging, got like one in one hundred and fifty. You're saying newer research showing about one in 90? Yeah.
Autism Rates in Australia
Mandy: And I must admit, you know, I'm not really up with that research. I guess perhaps I get less caught up in the label of autism these days other than for funding issues and more concerned with, you know, how is this kid coping day to day and how is this kid succeeding? And so I, you know, I work with one parent in particular that reminds me, you know, do you think he has autism? And I'm like, he has learning challenges. You know, he's not he's not learning akin to his peers. And so I guess I know that's probably hard to hear that for parents listening to this, that you know that I know that I want to move away from a diet of the label of autism as important to be in a community of people that understand your challenge, et cetera. But if you look at a kid individually, you don't want to get caught up in the label. We want to get caught up in what are they doing well and what are they? You know, what can they do better? So I'm not really probably as up to date on this as you are, but I would say my view is that it's it's prevalent and it and that autism does not discriminate, but it doesn't seem to discriminate between countries. I think just maybe your research is better than ours, but I would say that your numbers, you know, they look like they double what out what I think your numbers are. But I, you know, I don't think that's an accurate picture. That's just my personal opinion.
Mary: Yeah. And the numbers in the United States just recently changed from one in 54 kids to one in forty four. But it does vary by state. Right, right. And both in the United States and in Australia, it seems that autism occurs four times the amount in boys than in girls, but you have a girl. And so I have found that with very young children, it's just all the signs. They're not pointing the hand, leading the, you know, those not responding to your name. All the signs that are on the chart, which I did a video blog on we can link in the show, notes all things from chapter two of my new book, Turn Autism Around. But do you see what your thoughts are about autism in girls, especially in Australia?
Autism in Girls
Mandy: Yeah, I mean, my journey anyway always took from my perspective because lots of other people have different journeys. But weirdly, when I first started my own program, so you know, after I'd been doing work with my own daughter and recruited a lot of therapists and eventually another psychologist, I was like, You know, I need to do this professionally because I need to learn. And, you know, I need a lot of therapists and I can't this on my own. And then other parents started asking me, so I am pregnant. Weirdly, the first 18 clients I had were all girls. So I think that's coincidental. Or maybe they knew my journey. You know what I mean? Like, I was a parent that was not the clinician back then. I was a financial person in the program, but I got a lot of publicity. We were the first center, ABA center that had ever opened in WA, and so we had massive amount of contact. And so maybe that was it to the parents related to my journey. And so we just naturally got girls. But I have always found girls really behavioral, you know, very early on, a lot of tantrums, self-injury, aggression. They're the kids that I've worked with and the kids that still are in my program were the ones like that from presentation. Now, of course, environment accounts were a lot. And so, you know, it's it's natural culturally and environmentally to tend to treat girls differently as well. And so, you know, maybe their behaviors get reinforced more is that as parents, maybe we give in to girls more and we reinforce that behavior more. I don't know. Maybe if there's just an environmental and not not not an anything else to accounting for that, maybe not a genetic component to that, but that has been my experience anyway, is that girls are really behavioral and I've had other people say that same thing to me. I'm not sure what your training has been, but
Mary: Yeah, girls in general do get missed a lot for for the more mild cases, too. Yeah, I think, yes, research shows, is that, you know, girls with ADHD and autism may. May look a little differently, especially as they get a little bit older, so maybe because you are an ABA center and you are a parent of a girl. It did attract...
Mandy: The higher need kids that were diagnosed earlier. Thats true thats a self-selecting population right there.
Mary: Like they, especially ABA. In general, you're not going to go to an ABA clinic unless you you think you really have an issue. Yeah. So you said it was difficult to get Abba initially in place, but it is Abba like in the United States, like some people think, while ABA is good for very young children, but our older children, they they don't like to provide ABA, is that what you find in Australia?
Mandy: I guess my journey, which is so great to talk to you and have parents listening to this, is that there is a massive misunderstanding, at least in this country of what ABA is the science versus the therapy. And so it's very hard to have that conversation, particularly with, you know, legislators. I think you would call it like the government that the scriptural instruction and what they think ABA is like sitting at a table and chairs, you know, 20 hours a week and pointing to stimuli. But that isn't ABA. You know, that is an application of the science of teaching methodology, but it's not ABA the science that comes from behavioral science. And so when when someone says they're doing ABA, you have to ask, what does that mean? What does that look like for me? That is, I'm incorporating behavioral science to teach my daughter effectively on a day to day basis things that she needs to be successful. That's what ABA is in my daughter's life now. And, you know, typically that's how it should be always like looking at your kid and going, What is the next skill that this kid needs to learn to be effective? And you know, that might not be sitting at a chair pointing to color cards. So if that's an easy application of the science for people to learn that aren't, you know, that don't have a lot of training, and maybe it's kind of easy to learn how to do this trial instruction. So when you ask me, you know, how did it look in Australia? There were people doing this great trial instruction, and that was my early introduction to ABA. You know, table top. You guys call it like knee to knees. Is that something that's familiar to you?
How Does ABA Vary Country to Country?
Mary: I mean, there's a lot of differences between table time and what people consider table time and we don't like. I do a lot of table time, actually. I think it's great for young children to have an area where they're, you know, attending and it's all fun. And we we actually combine natural environment teaching and table time intensive teaching. But yeah, like we don't do any, you know, holding kids in the table or blocking them. We it's all natural and, you know, we want kids running to the table and that sort of thing, which again, it's this way different view of what ABA is actually is. I did do a podcast which we shall link in the show. Note what is ABA and the four myths and truth where I talk about the science of ABA. The science of ABA is happening all around us every single minute. And so when we're talking about ABA programing ABA therapy, it can really look differently and a lot of it is isn't great, and it's giving ABA a bad name. Back in 2006, when your daughter was diagnosed and back in 1999 when Lucas was diagnosed and I became a behavior analyst, I mean, social media wasn't at play, and now it's it's this huge controversy which adds another whole layer to the whole thing where it's like, is autism a gift? And we shouldn't treat anything. We shouldn't do anything. It's like, Oh my god, I feel like...
Mandy: Parents have a lot to deal with now. Yeah, yeah. So I guess I love what you just said, all of that, actually everything you've said. But in terms of that, what I saw early on in Australia was this great trial instruction not done well. So a tabletop not done well and exactly what you said. Kids blocked restrained, held in the chair. And that's just poor training. You know, it's just perhaps how they were trained. And, you know, I always want to be sensitive talking about this, but it was a different era to when LOVAAS did those studies, you know, just in traditional discipline at school, et cetera. You know, I don't know if it was happening in the 80s, but certainly when I was at school, you know, there was there was a diversity of views at school with rulers and canes and, you know, and restraint and time out and all of those things. We used in a school context, so we have to put lives in that regard, but you know, in of this program, he used a verses in the people that were trained by LOVAAS, use aversives as well. And now we have these restrictive practice legislation in Australia about, you know, all of those things are not allowed to be done without kids blocking restraint.
Mary: Which is great. The other great thing is that there was no analysis of verbal behavior intertwined. Oh, that's right. Back before 2006, really anywhere. And now, of course, you know that all the aversives need to be done and not even, you know, an option and all the verbal behavior needs to be added. And so. So I know that you do believe that ABA should be available for older kids as well.
ABA in Older Children
Mandy: Well, the science of taking data, analyzing what's occurring, those things that come from science are effective for everyone, in every context, from our science, but from, you know, training your cat or your dog to your, you know, working with your employees in a business context to support behavioral science is applicable for everyone. It just happens to be really effective for people that have high challenges. And so and autism, obviously is an area where kids present with a lot of challenge. So this is where you guys in America have been on incredible journey, you know, starting with Katherine Morris and probably well beyond before her of applying ABA in the field of autism. But of course, behavioral science is effective anywhere so and any time. And so I use it on my self to improve performance in my own sporting career, in my daughter's sporting career, with my typical developing kid to help you know I use it with her once I understood it. So, you know, that particular program developed for kids with autism, verbal behavior, pregnancy, et cetera is is one part of a but. But ABA is a massive science that can help anybody that wants to get better and learn something or reduce a behavior. So it's that that I'm passionate about is when you hear those things in the social media like ABA is cruel and aversive and there's restraint that's not ABA this someone's interpretation of the science or you know, or, you know, their use of it in one context. And you wouldn't say that medicine is a terrible science because you met one bad doctor or you didn't like a doctor's approach. So that's I guess my journey now is to show that ABA, for my daughter at the age of 17, is different at the age of two. But it's still the science of measuring, showing and improvement. Dealing with challenges, looking at what's most important for her as a skills are going to help her be more successful in her life. And that's what I'm passionate about, is educating people about the science and the application of it is different for everyone. And of course, as you say, incorporating natural environment training, ensuring that your skills, you know, the skills that are taught in a tabletop generalize and are effective and work where they need to show up. All of that is a science that is great contraction and tabletop, and that's an application of it is one person's view of what's effective.
Mary: Yeah, yeah. So your daughter is 17 now and and how is she doing? Is she still impacted by autism?
Mandy: Yes, she is. But you know, gosh, you have to stop. I think every now and then you must have to do this as well, Mary and go, Actually, what I'm dealing with here is an incredible human being now that has had done a lot of work to get to where she is, and I took it to have her nails done. She loves to get her nails painted now, which is incredible because, you know, I couldn't get near her nails for so many, you know, I just had to cut them. But now she loves to go and have her nails done, and I have seen a guy there who owns the clinic and he is a support worker, and it took him a while to work out that she had autism. So I was like, Well, you know, she's profoundly impacted, but she has conversational skills now and she loves to ask people questions. And it took them a while to work that out, so it was a really proud moment for me. But you know, I finally at the point, I remember listening to parents going, Oh my goodness, my daughter, you know, my my child is a miracle and I love them so much and I'm so proud of them. And you know, it's really hard for me to relate to that. Not that I didn't love my daughter. Of course I had, you know, that goes without saying, but she was so challenged for such a long time and we had such severe behavior and self-injury. You know, my survival at least, was to detach as a parent and a clinician and keep working, you know, like keep doing the work as a clinician with it, but I think I've gotten to the point because I have a team around here now and I don't do as much work with here anymore, where I am back being a mummy again and just having proud moments and have a team of people that I work with. But I'm always posting about her, about how proud I am and the things that she's doing and how many positive statements she's making about her own life in herself. And so, you know what? She's doing incredible. I I actually have gotten to the point that you asked me before what her functioning level is. She is you and I strongly associate with IQs. But you know, she had to have her IQ taken because she's just going for this new funding that we have in Australia. And so she came in with an IQ of 42. And I think that if I have to place it anywhere, that's an effective place to put her. In other words, she has a severe intellectual disability. And so what she has achieved for me as a mummy is a miracle. And that is because of all of the gifts that people gave me and shared their knowledge. And I have just been on the journey of a lot of incredible people, including you, that have contributed to her life. And so for me now, she is a miracle and I'm doing. She's a really happy kid. I guess that is my journey for everybody. Not everything is happy. I feel like her level of happiness is more than most people on the planet on a daily basis. Her disgruntlement and negative statements, her challenges are a lot less than her peers.
Mary: That's great. Yeah, I think everything you said there was so spot on. I know Lucas has been diagnosed with an intellectual disability as well early on, and I did a video blog on intellectual disability because I think a lot of parents of teenagers and, you know, with significant autism are upset by the intellectual disability and the need to get an IQ test because it's really hard. I mean, the fact that she's conversational to some degree and has an IQ of 42 whatever that means, I mean, I think that's pretty amazing. And you can't really, you know, you definitely can't judge somebody by their IQ score. I mean, that's just ridiculous.
Autism and IQ
Mandy: And yes, I think that assessment as well, right? Because when I was living in America, she had to be diagnosed in America to access your insurance system. And so I went to a wonderful doctor in Cincinnati. I love America, by the way, and I would be back and happy if I had to establish my business here. But yeah, and so she had to be re-diagnosed. So I got a BCBA who was a diagnostician as well. And so she, you know, she she ran that very differently to have a mainstream clinician that doesn't have any understanding of behavior analysis. And so, you know, it was it was different. She did better in that IQ assessment than she would within someone that's not trained in ABA because she just gave her breaks and praise and those things that would allow her to be more successful in attending to the tasks. And so I think IQ came in about fifty eight there. But you know, there was probably it was a different context in which she was assessed. But you know, anyway, it's deeply intellectual disability by that measure. Yeah, but I think you're right. I think it's strange that I've gotten to this point that in many regards, I see that as an asset of hers because she has, you know, this is a known behavioral description, Mary, but a naivete or a way she doesn't see the nastiness in other people or she doesn't ask too many questions that some of us ask about day to day life, particularly in a post COVID world. She sort of tends to be present in the moment and be, you know, in touch with what's occurring in her life. Day to day, which many of us aim for, you know? And so that level of intellectual disability, when she doesn't ask too many questions about things that stress us out, I see that as a real asset now. And I work with some high functioning kids. Ask a lot more difficult questions about day to day stuff like, Am I going to die? Am I what's going to happen to me when my parents die? She doesn't have that.
Mary: They're getting bullied and they understand being bullied. That's right. He just doesn't understand if he's being bullied or anything like that. So. So it does keep him really immune from getting unhappy from other people's attitudes, if you will. So, I mean, it sounds like your daughter is doing incredibly well, I'm sure, but because of you and your team, so I always say like, we want our kids to reach their highest potential and continuously. That's a bar that keeps moving, but to be as safe as possible, as independent as possible and as happy as possible. And so it sounds like you really have a team to embrace her, to keep her safe and and constantly improve her. Her language skills and her independence skills.
Mandy: I've never given up on her language, which, you know, I see a lot of parents going through early intervention and going, well, maybe this is as good as it can get, but I just kept knocking on doors and asking questions and learning more. And I still have not let go that my daughter is going to have massive improvements in language because of the people that I have met. And I still say that. And so she still says things that surprise me. And so I still see through all of the work and learning that I have done understanding mechanisms of language, etc., that she can still make dramatic improvements. And so that's still my focus of intervention. While, of course, is all the self-care component in the gosh, can we give her now a way to work and earn an income and maybe develop some independence? There's all of those things, but I haven't given up on her language because you get a lot of stuff free when you get language. And so I mean, when I say free, I mean, you get the skills that you don't have to teach when someone can learn through rules and observation and asking questions and seeking information on their own. You get a lot of free learning that way. And so I haven't given up on the language and I'm never going to do that in my lifetime. As long as I'm around, I'm still going to keep targeting that. And I just recently, I know, you know him as well. I'm very passionate about Patrick McGreevy because a lot of people contributed to my journey to get to precision teaching. When Patrick McGreevy was one of them and I just recently had a podcast on him talking about verbal behavior and, you know, do you still go after it? Like, do you still seek to go after language or do you focus your energy on other things? And I think that's a really good question to ask. He has a lot more experience than me. Obviously, a lot more history. And I love that man. I've I met him once when I was in Indiana, and I just I love listening to him. I love everything about him, and he contributed to my journey to get to prescision teaching. But he was like, Well, if it's going to take you a year to get this one, you know this this one skill, is it worth investing all of that energy? And I haven't gotten to the point where I've gone. You know, this is too hard to get yet, but maybe I shouldn't get this.
Mary: There's a lot of time in the day, you know, and they should be working on improving their skills in all domains. So and I know at some point we have to wrap up. It's been great to talk to you. So I have a couple more questions. I do want to kind of find out. How did you like what year and you're a BCBA?
Mandy, BCBA and Precision Teacher
Mandy: Yeah to summarize that very quickly because we're thinking from, like, you know, age four to age 17. So, you know, one of the psychologists that I work with, I guess the greatest gift you give me is, he said, you know, you should become a BCBA. That is not the perfect. In my view, I have personal opinions about that qualification, but it's certainly made me do the work. You know, it made me learn core principles and things like that. I don't think that people that are qualified with the BCBA, I have all of the skills that they need to understand the full science. But anyway, so I got my BCBA in about 2009 and so I started to work as a clinician after that. And eventually I moved to a big program that I had started here. I employed a Ph.D. from New York to come and manage it, and I eventually stepped out of it and I moved to America. And I based myself in Indiana for a year, and that's when I found my way to precision teaching. I there was some precision teachers there. Patrick McGreevy was there. We weren't incorporating precision teaching into Judy's life. But I met some people and I got passion about it. And I went to the Precision Teaching Conference in Chicago in 2014, and that's where I met Kimberly Berens. So it was a founder of Fit Learning. And really, that changed the trajectory of my life because I love the program. I love the methodology. I just loved her. I guess I just got a massive girl crush and I just wanted to be on her journey, and for some reason she agreed to it. And so I've just been following in his footsteps. And yeah, and learning from her and her journey. And then, you know, the world of precision teaching, which is, you know, you already know, is a it's a kind of a different journey. So yeah, that's that's kind of been my history.
Mary: I, you know, I love talking to you because we have so many similarities. So my first attorney, when Lucas was three and a half or prayed for by that point, he said, you should become a BCBA I was like, What? What's that? And then I also my my precision teaching background started when I saw Rick Kabina present and in 2001, and I was like, he gave his email address at the end of that and I was like, Oh my God, I'm totally emailing him. And I became, Yeah, he became my BCBA mentor. Her and and really show me the way in terms of precision teaching and everything so we can link both of those in the show notes. I've had several people from precision teaching, including Dr. Kim Berens, who is the founder and creator of the Fit Learning model, and then Rick Kabina, Janet Twyman, Amy Evans and Kelsey did a podcast recently. Teresa Lyons did a podcast on good learning. It's a great methodology model to improve all kinds of skills, with fluency based instruction and standard celeration charting and all the things that we're not going to be able to cover tonight.
Mandy: And it's just one model. I just would urge people because, you know, through my journey, I heard a lot about precision teaching and I saw it. It's a hard thing to wrap your head around and to incorporate. But you know, if and you have some incredible people that have already spoken about that, but if there is a parent out there that goes, you know, we don't know how to do this or like, I'm stuck with this. I know you have your own resources as well, but I'm always happy to be in contact with people to help them understand how you build frequency and in behavior and get more of it. And so I make it more available to your kid to show up in the places that you need it. And that's what happened for JuJu is that she got a lot more practice through precision teaching and things she needed to be flown at to apply effortlessly and easily. And so her development of conversation did not come around from before precision teaching. And and so anybody that wants to learn more about there is like, I don't know how to do this or I don't know what a child is or anything like that. That's my standards to help parents. And there are some incredible precision teachers out there that will help you as well. But if you want some guidance on how to learn more and can be happy to take contact from anyone that wants to learn.
Mary: Wow, that's a very generous offer because we have hundreds of thousands of downloads on my podcast.
Mandy: Well I will honor that, if you know, is there because not everybody wants to go on that journey and some people go, You know, I've heard it, I've seen it. Other people have talked about it, and it's a hard thing to get started on. There are some really good programs that are coming out and how to teach you to chart, etc. But it seems a little bit scary when your first approaching it. And so I can, you know, I'm happy to answer any scary questions that you may have.
Mary: Well, and maybe we'll do a follow up where, you know, because I do know precision teaching and I do know verbal behavior. But Lucas is still not conversational and needs to work continuously work to improve his language skills. So, I mean, maybe we should at some point sit down and kind of review some of the things I could be working on with him and and do something else in the future.
Mandy: What I love about you, Mary, is you are so humble. You're an incredible professional. But you know, yesterday I had the honor of interviewing Elizabeth Horton, who has been a precision teacher for 50 years. And you know what she said to me? I'm still learning every single day. And I think as professionals that we're still learning every day. And so I just love that I would love to talk to you about my journey on that measure because my journey with FIT learning has really been in opening up language to kids that have my daughter had very rigid language still, and her language is becoming more and more flexible every day. So that's been my journey with Kimberly Berens to learn that, I'd love to talk to you about that.
Mary: Yeah, awesome. So I know you have a podcast, so how can listeners find your podcast, find you and really continue to follow up with you?
Mandy on the Turn Autism Around Podcast
Mandy: Yeah, I have my own website. Mindy Mason.me, and I'm sure you'll share the resources as well. But on my podcast where I'm just interviewing incredibly, the giants of precision teaching, because this has been around many of the precision teachers that I've interviewed in my, I went to my fifth podcast now not just a baby in terms of podcasting, but they've been doing this for 50 years, some of them. And so I'm just like, just excited to hear their journey of how they found their way to because it's behavioral science. It's just it's an element of behavioral science that and a particular way of measuring. So, yeah, you can find me on Facebook, the ABA and PT podcast, and I'm on all of those main things like Spotify, et cetera. But if you go to Facebook, you'll be able to get the links to my podcast and I try to publish two podcasts awake some very early on. But with Christmas, I took a bit of a break. So, but yeah, I'd bet my podcasts will come out again in this week.
Mary: And I will be coming on your podcast. So it's the ABA and PT Podcast, and PT is for precision teaching not physical therapy.
Mandy: Although I'm passionate about that, too.
Mary: Sounds like we're both passionate about a lot, so. MandyMason.me is the website and before I let you go, one final question part of my podcast goals are for parents and professionals listening to be less stressed and lead happier lives. So do you have any self-care tips or stress management tools for all of us?
Mandy: Oh, that's a great question. There's a lot of things I could say that because I'm very passionate about exercise, I've always been. But the thing that I really want to say because I've learned this just recently from an incredible human being, Abigail Culkin, who was very early precision teacher who has always measured her own behavior. And one of the things that she's been really passionate about, which many people think that as behavioral scientist, we don't do is measuring inner behavior. So things like thoughts and feelings and urges. And so she is really motivated me to practice using positive statements and literally and my whole team in doing this now as well. And so if there is one thing you can do that can really impact the way that you show up on a day to day basis and how you feel is just practicing one minute a day. We do it as what's called a free write, which is like just writing them down. You can say them out loud, but writing them down. Abigail says it's more effective as we try to set a one minute timer and just come up with everything you can think of as positive in your life in the moment. And there's interventions that you can do beyond that. But my team have just been trialing this for the last four weeks. I know before Christmas we started measuring how many positive statements were made in my clinic just the day before Christmas, and it was 112 positive statements. My team recorded that day about things that were occurring at the clinic and in our lives. And so it might just sound like this, you know, I can do this. I will not get stopped. I've got written on my water bottle here. I got this. This is my I got this. I can keep going. I can try again. Tomorrow is another day. You know, you can gather things that people say about you. I'm strong. I don't give up. Sometimes things are hard, but I can turn this around. And so you just do that one minute a day. And then the next day you review what you said and you add to it and what it allows you to do is recruit those statements in the moment when challenges come up. And what I hear my team doing, I mean, Abigail has done this her whole life. And so I have a podcast with Abigail. If you're interested in that and doing that, you can go back and listen to what she did for herself. And I yesterday interviewed Elizabeth Cohen, and she does that with gratitude statements. In particular, she's found that effective during COVID, which is, you know, just all of the amazing things. And if I had to say something right now, I'm just so grateful to have Maggie and to be here and to draw on those positive statements and those gratitude things. Of course, there is a science behind that that sounds like a very simple intervention, but if you have one minute to do that and you can do it for two weeks, even without taking any data on your improved performance and how you recruit those during the day, I promise you it will have an impact on how you feel in the moment and when challenges arise. So, yeah, I would urge you to try that one minute a day for two weeks.
Mary: I love that. Well, I can't think of a better way to end that. It's been so great to meet you, Mandy and I will be following up and I will be hopefully having you back on the show at some point to talk about how we can use proven strategies to increase language, even if you feel like you've been stuck for months or years. So we're going to follow up and do that, and I'll be on your show as well. So thank you so much for your time, and I look forward to it.
Mandy: And thank you because I did not know that you had a large Australian following. Well, I could have just assumed because I've been following you myself, but but you know, I'm on the West Coast, which is a long way away from a lot of the population in this country. But thank you for advocating for Australians to learn more about verbal behavior and educate us because you don't have nearly as many university programs as you do or as much training. And so I thank you for advocating and caring about Australians.
Mary: I mean, Australia, it's the country I've been to the most to present three times and...
Mandy: Come back.
Mary: It's a long way away. Next time I come back, I don't think I'm flying economy either. But let me let you go. Thank you.
Mandy: Thank you, Mary.
Mary: I know my listeners will love this show, so thank you.
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/orkshop, where you can learn how to avoid common mistakes. You can see VIDEO. Those 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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