Autism Marriage Counseling: The Struggles Parents of Children with Autism Face

Transcript for Podcast Episode: 233

Autism Marriage Counseling: The Struggles Parents of Children with Autism Face

Hosted by: Mary Barbera

Mary: This is the Turn Autism Around Podcast Episode number 233. Today we are talking about marriage counseling and autism and what couples therapists need to know about the struggles that families are facing with autism. It's actually a lecture. I did for couples therapists, and I really put a lot of time into it. So I think there's a lot of gold in here. I don't know if I've ever brought this up in the podcast. Maybe I did before, but my husband and I did get recommended to go to marriage counseling shortly after actually at the appointment when Lucas was diagnosed. So we did see counseling. I talk about that a little bit, but whether you're a parent or a professional, I think this is an important episode to learn about the struggles, the divorce rate and what we can do to make couples have better relationships with themselves and their kids. So let's get to this important episode All About Couples Therapy.

Intro: 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.

Conference Intro: I am delighted, actually, to bring Mary Barbera to all of you today. I first actually heard Mary speak at a conference that I went to several years ago, and I loved her approach, her enthusiasm, the way she was empowering parents. And then I was fortunate enough to meet her at a mastermind group that we both belong to. And since then, we've been working on finding a date that works to bring her to all of you. And so we finally have arrived at that date. And I'm going to have her tell you her own story, which is a very compelling story. And she will talk about that, I'm sure. But before I turn it over to her, I really want to recommend her book, which is Turn Autism Around. And Mary's work and her approach in this book is so designed to help couples and families immediately when they first really have any sense that there might be some issues with their children and not have to wait for the long medical system or a diagnosis, but to begin to be able to really help them right away. She's got amazing strategies for parents, for tough things like potty training and bedtime. And I'm sure she'll touch on a little bit of that. But I asked her specifically today to speak about her focus on the impact of autism and children on the spectrum, on couples and families. So like I said, her approach is super empowering. And, Mary, thank you for being here and go ahead and take it away.

Mary: Okay. Thanks, Ellen. Happy to be here. And like Ellen said, we've known each other for a few years now. And I will tell you a lot about my story as we go. Today, we are going to talk about the prevalence, key characteristics and struggles of children on the autism spectrum disorder, identify common challenges. Couples who have a child with autism often face the need to know information when providing counseling or support to these couples. I am going to cover three action steps to take to start turning autism around. I know you're not going to be the ones necessarily doing the action steps, but I think it will be helpful, like when people are like, Well, what do I do if he does X, Y, and Z and you give advice? It may not be what I would recommend. And then we're going to talk about resources for parents professionals to learn more about autism. Ellen already held up my book. I have other resources and I have just a lot of information. So I'm going to tell you my story because it's very much a part of what I'm doing now. And so it's Christmas time. December 27th, 1997, when my second born son, Spencer, was born. And here I am with Charles. He was an emergency medicine physician. He still is, but now he is. He's been a vice president of a health system and now he's the CEO of the health system of the hospital locally. So I thought everything was great here. You know, I thought I had a master's degree in nursing administration, married to a physician, had two healthy kids, and lived in the suburbs with a white picket fence. And I thought everything was fine until Spencer was two months of age. And I took him for a visit. And my husband said, Well, when you take him, when you take Spencer, ask the doctor how many words Lucas should have. And this is back in 1998, because Spencer was born at the very tail end of 1997. And so I went and I asked the doctor, you know, Spencer checked out fine. I asked the doctor how many words Lucas should have at 21 months of age? And he said, at the time, 20 or 25 words, something like that. And so literally on the way home, I was like, counting words, like. E-I-E-I-O was five words he had said ball a month prior. He had what I now know is delayed echolalia. So we took him to the park and there would be a sign there. Please do not feed the ducks. And so they were ten feet apart at the park and the museum and my husband would take him and he was very interested in letters, which is called Hyperlexia and my husband would read, Please do not feed the ducks and he'd add, quack, quack. And then Lucas would run to the next sign and my husband would say, Please do not feed the ducks. Quack, quack in the middle of the night occasionally. Look, it would wake up and he'd go, Please do not feed the ducks. Quack, quack. Literally on the way home from this appointment where I found out he needed 25 words I counted. Please do not be the ducks. Quack, quack is eight more words. So I got home. I was not thinking about autism. This is back in the late 1990s. Autism wasn't really that much talked about. There was no social media. It was a very different time. When I got home, my husband said, So how many words does the doctor think he should have? And I said, 25. And he said, Well, he doesn't have 25. Oh, no, no, he does. He does. I counted and he didn't say, what are the words Mary? Like, seriously? But he said, So you don't think he might have autism? And so he dropped that bomb. I was shocked and confused and horrified. The only thing I had known about autism was I had watched Rain Man and I had done a junior clinical nursing rotation at a residential placement. And there were some teenagers there who were thought to have autism. And so in the eighties, that's what I knew about autism. I didn't know what it would look like in a toddler. So on that day in the family room of my old house with the blue carpet, I said, It's not autism. And I never, ever want to hear that word again. And I went into a deep state of denial, and he didn't bring it up again for several months. And we lost a lot of time. And finally we took him to preschool. He went to typical preschool when he was thinking that that was going to jumpstart things, He went to speech therapy when he was two. Both helped, but, you know, I didn't know how to. He had some words, what I now call as pop out words. I didn't know how to teach him to talk. I didn't know how to teach him anything. And when we were at the developmental pediatrician's office the day before he turned three, he was diagnosed with moderate to severe autism. And I was in tears. We had gotten a preliminary diagnosis from a local psychologist. So this wasn't a real shock. But that local psychologist said PDDNOS., which was confusing, you know, that was kind of mild autism. This developmental pediatrician, Dr. Copeland at Children's Hospital, Philadelphia, was saying moderate, severe autism. So it was all like a lot. It was like a lot more than I thought it was. And so I have water and milk up here. And I really don't know. You know, Rachel, my assistant's here and she probably has never even heard this story. But at the end of the whole developmental pediatrician visit, Dr. Copeland said, So do you have any questions? And my husband said, Yes, I have a question, she said. He said, sometimes Lucas wakes up in the middle of the night and he asks for milk. And Mary runs downstairs and gets some milk, and I think she should just get him water out of the spigot in the bathroom. So what should we do? Who's right? Should she get milk or should we give them water? And so the developmental pediatrician, after he just gave us this hugely serious diagnosis, said, I think you need marriage counseling. Of course we do. Because, you know, neither one of you is right. There's pros and cons to milk versus water. But if you're fighting about this, then you're going to be fighting about a whole lot more. There's a lot of decisions that are going to have to be made. And so we came out of that appointment on the ride home. Lucas was completely silent in the car. I was crying. My husband was saying things like, he'll never go to college, he'll never get married. And I was telling him to be quiet. I had read some books about ABA. I knew that the brain was pretty plastic, would have been more plastic and more changeable. At 21 months now we were at 36 months almost to the day. But at that point I was, you know, telling him to stop like all this pessimism and all this. You know, I'm sure many of you are out there or you're psychologists or couples therapists. You do know kids who've done really well, who go to college, who get married, who do drive a car. And at that point, like all my expectations for both my kids and everything kind of flew out the window. You know, that whole white picket fence. I want everything to be perfect. It was like, okay, this is a big issue. So the next day was his third birthday. Here he is pictured with just a diaper on because every time I would turn my back, he would strip down. I didn't know how to teach him to keep his clothes on. I didn't know how he couldn't blow out the candles. I didn't know how to do that, how to teach him to talk. This was a Saturday. It was a planned party. But it was really tough because, you know, my husband and I were grieving. My parents were there. They were grieving, you know, like it was, it just seemed so final. Like moderate, severe autism was just so big. At the time, I was a mastered prepared nurse without a lot of information about autism. But I knew that starting this Monday, the Monday after this party, I was going to start making my calls and start figuring things out. The developmental pediatrician had recommended ABA therapy, applied behavior analysis therapy. It was and still is, the most evidence-based treatment for children with autism. Back then, it wasn't covered by insurance. Now, in all 50 states, there's been legislation passed that does cover it. Luckily, where I'm from in Pennsylvania, some other gung ho parents had figured out a loophole and so Lucas could get medical assistance regardless of family income. And he got pretty much all of his services paid for. That was very lucky because at the time most people in other states were mortgaging their houses. So that day and from then on I felt like I had just been dropped into a maze or like a hole, you know, with Lucas to a guy had fallen in and I had to figure out how to get myself out, how to get him out with me, how to get out of the maze or this hole and then start climbing a mountain. And it was really tough. And right now, fast forward, I'm going to tell you kind of how I went over to the professional side of things. But a lot of people now, if you're a parent or grandparent, can relate to this I'm sure. The waiting list back then was only a couple of months long to get into the developmental pediatrician or to get ABA therapy started. Now, the wait lists are nine months to two years in many cases, and that was before COVID. So COVID also messed up a lot of things, including the waiting lists and care. So some of the struggles when you have a toddler with delays, signs of autism or a diagnosis are one or both. Parents can be in denial. You need to know how to recognize the signs of autism. Waiting lists, as I said, confusion, uncertainty, optimism, pessimism, hope. I did a podcast interview with my husband. I have a weekly podcast that just celebrated 1 million downloads. And so I interviewed my husband for one of the podcasts, and we were talking about how he was overly pessimistic and I was overly optimistic and he agreed. But back then we didn't have a lot of examples of kids doing really well. Early intervention therapists in your home, you know, right away you like lack privacy. You know, I swear half the county has the code to get in my door and, you know, people just come in and go out and they leave. And, you know, I run into people and they're like, Oh, yeah, hi, Lucas. And I'm like, looking at them. They're like, Yeah, I was Lucas's therapist. I'm like, Oh, just at school. Oh no I was in your home. And I'm like, I don't even remember different opinions, advice, ideas on what treatments to pursue, accepting the diagnosis and the severity level. That was the second diagnosis technically when we went to the developmental pediatrician. But there was a disconnect between PDD NOS. and then Autism spectrum disorder, moderate to severe. We're going to talk about the DSM four changing to the DSM five and all kinds of it just adds to the confusion. And then so many decisions starting with water versus milk. So how did I go from an overwhelmed and confused parent in denial for over a year to a leading autism expert? Early on, before Lucas went to kindergarten, I was approached and found out about this verbal behavior project. And it is still going strong. It's changed its name. It's the Pattan Autism ABA initiative. And I was the lead behavioral analyst in that initiative from 2003 to 2010. That initiative was through the Pennsylvania Department of Education. The special ed arm is called PaTTAN or Pattan. In that time I was working, I went to work in schools working with special ed teachers, regular ed teachers, paraprofessionals, speech therapists, occupational therapists, school bus drivers, cafeteria aides, anybody that wanted to learn and would listen. I was a behavior analyst and it was a great experience. And I got a lot of experience working with hundreds, if not thousands of kids directly. Also, in 2007, after I started working with the project, I knew there was so much in my head that the books were really outdated. The books I used for Lucas are really outdated. So I wrote the book, The Verbal Behavioral Approach, and this book was published in 2007 and it is now available in 17 languages. It also gave me the opportunity and the invitations to travel the world. Speaking about autism, here I am in Australia in 2017 to a sold out crowd of 300. But the problem was I was only speaking for the keynote and maybe a panel at the end and it was a lot of expense that they paid me. And people flew in from different parts of Australia and different parts near there and then they'd get home and they'd be like, okay, well Mary showed a video and the kid wasn't on the floor screaming and I don't know what to do. And at the same time, I left the Verbal Behavior Project in 2010 to finish up my PhD in leadership, and I also started working with little kids like Cody in his home in early intervention, and I worked in the early intervention field of birth to three and 3 to 5 from 2010 to about 16 or 17 when I fully transitioned to becoming an online marketer. And that's I'm in Jeff Walker's Group Coaching Mastermind program, and that's how I know Ellen. And basically my mission started when I joined in 2016 is really to stop the 1 to 1 work and stop all the travel or reduce it to get my message out online where people can both parents and professionals can learn. So starting in 2015, I started creating online courses for professionals and gung ho parents. And then just in 2021, I wrote a book that was published by Hay House, Turn Autism Around: an Action Guide for Parents of Young Children with Early Signs of Autism. And that's the subtitle. It's really important because I want to get to the parents who are worried, who are waiting, and one of the partners is in denial. The grandparent sees it, but the kids don't see it. The mom sees it, but the grandparents are in denial. And I want to. It doesn't matter if it's autism or just a speech delay or sensory processing issue or early signs of ADHD or early signs of giftedness or COVID isolation. These procedures work great. Down's syndrome. Anything that's causing developmental delays, differences or disorders. The forewords by Temple Grandin, one of the most well, probably the most famous person in the autism world. Temple has several books. She is on the autism spectrum. So what do couples, therapists and psychologists need to know about autism? I posted this. I'm creating a presentation. Actually, I was preparing this presentation last week, and so I thought I'd ask my Facebook group with 50,000 followers. Actually, we just reached the 50,000 mark this weekend,and I thought, I'm going to put this out there and see what they have to say. And I also put it on my personal wall and I got over a hundred comments. So some of the comments and I'm going to show you where you can read the rest of the comments when you have time. But here is a comment: Two things. Autism is different for each individual person and family therapy is important. This woman is an M.D. And a parent of a child about the same age as Lucas. I've known her for years, so she had a lot of good points. I just copied her whole thing. Doing things alone as a couple may not be an option due to limited or no child care. Sleep disturbance is common in the household. Financial pressure of care not covered by insurance. Parents have to agree on an effective behavior plan, but this can be hard. ADL activities of daily living care for a person with level three. Autism is a big demand. Constant on alert is exhausting physically and emotionally. There was a study done in 2009 which showed that autism moms have the stress level of combat soldiers because they're always on alert, waiting, waiting for the next shoe to drop. Here's Celia Hyman, who's another friend of mine. She's a doctoral level PCV, I believe, or pursuing her doctorate. She also has a son with autism. She said couples do not sign up for the autism journey. And when they are forced to be on the journey, the acceptance and perspectives taken can differ. When they differ, they need guidance to reconcile. When it can't be reconciled, they need guidance to choose their own course that is best for every member of the family. The stressors that arise include isolation from friends, family and community, financial burden, lack of sleep, mental health concerns, blame, guilt, exhaustion, lack of intimacy with spouse, parenting, differences, fights, and advocating with schools with insurance, trauma from the child's challenging behaviors. So I pulled out three of more than 100 responses. I think that pretty much sums up a lot of the different struggles and things that couples therapists need. So you can read over the comments. It was a January 4th post on MaryBarbera.com/Facebook if you go on there also like and subscribe and all that stuff to help the algorithm know that they should spread my word. Okay so let's talk about autism spectrum disorder. It's a neurodevelopmental disorder that affects communication and social interaction. People with autism may have difficulty understanding and expressing emotions, as well as difficulty interpreting non-verbal cues such as facial expressions and body language. In body language, they have sensory processing issues, loud noises, bright bright lights. You know, a lot of kids, including my son Lucas, wear headphones a lot. It's a spectrum, and the specific challenges and strengths of the individual will be different. And then it is one in 44. Now, when Lucas was diagnosed in 1999, it was one in 500. In the late seventies, it was thought to be one in 10,000. And now those stats of the one in 44 change from one in 54 from two years prior and one it keeps getting more prevalent. But those are CDC studies that call up parents of eight year old kids throughout different states. And they say, how's your eight year old ever been diagnosed with autism? And that's how they get it. So they've been measuring it the same way for at least I'd say 8 to 10 years. So it is pretty much comparing apples to apples, the 1979 studies and stuff. Obviously we're a very different, different way. So when Lucas was diagnosed in 1999, we used the DSM. We didn't use it. The doctors used the DSM four, and the DSM five started to be used in 2013. But there are a lot of differences between the DSM four and the DSM five. The two big ones that I pulled out is that there's a broader diagnostic category. So the DSM four used two separate things in terms of classic autism or autistic disorder, Asperger's syndrome or Asperger's disorder and PDD NOS and was a pervasive developmental disorder not otherwise specified. It also included Rhett and childhood disintegration of disorder. So those two were eliminated, but basically they put everybody on the autism spectrum disorder. And starting in 2013, that doesn't take away somebody coming in and saying, I'm an adult and I have Asperger's syndrome because those were diagnosed prior to 2013 are still obviously valid, but it has caused a lot of confusion. And we're going to show you advocacy and issues with the media and all that stuff. And then the other big thing I think the DSM five did was it changed it from to a severity rating scale with level one being the mildest and level three being the most severe. So then we add media and social media. So in 1999, with the DSM four and the rate being one in 500, there really wasn't there weren't shows about kids or adults with autism. And there also wasn't social media. There was no Facebook, there was no Twitter, there was no, you know, Instagram or anything like that. So when 2013 hit and Facebook was alive and well, I'm not sure about when the other social media. Organizations started. But Facebook was definitely up and running in 2013. And so a lot of people that were diagnosed as Asperger's and could advocate and could talk and could communicate via messaging. They started writing books that autism is just a difference, not a disability. Autism is a gift. Media started featuring characters like The Good Doctor and then parents of kids like Kate Swenson from finding Cooper's voice. She has a million people on Facebook and she's a good friend of mine, and she wrote a really good book called Forever Boy. Recently, she went on here. This is her famous viral video. She went on in her car and just talked about, like the last time you think it's going to be okay, like she was. You know, her son is very severe. He just turned 12 and she's really in the thick of things. And she was in the thick of things since his diagnosis. And so she got a lot of hate mail, even death threats for saying that autism is hard and he has severe problem behaviors and those sorts of things. And also with the push of media and social media, especially social media. ABA Applied Behavior Analysis, which was and still is the most evidence based treatment for children with autism. A sizable I mean, we don't know how many people, but they are a very vocal minority of very high functioning, you know, able to talk and converse. And they were saying that ABA and they still are saying that ABA is abusive and that it's torture. And so now we add all of this stuff when little kids get a diagnosis or start to show signs and people start posting. On social media, they're told to avoid ABA and autism is a gift. And you just have you know, and it just makes for more confusion. So when you are parenting a child with autism, you get a lot of sleep deprivation. In many cases, some kids sleep through the night and are great sleepers. In our case, it wasn't the case. Lucas didn't sleep in his own bed through the night for like ten years. So there's a lot of co-sleeping, a lot of musical beds and lack of intimacy, financial costs of treatments and care, reduced ability to go out as a family, as a couple or alone due to behaviors, inability to get babysitters that will get it, or daycares that will accept it. Fighting, advocating with insurance companies, with IEP teams with each other. When I founded, I was the founding president of the Autism Society in my county and my mom would come to some of the meetings we met in person and she's like, Everybody's so angry. They're like fighting and they're fighting with insurance and with your schools. And then they're even fighting with each other. Like they don't know when to stop fighting. Like they're just in this fight mode. As siblings. I talked about the future rate. The rate of autism and siblings is one in five. There are sibling studies that are really good. If you live near a children's hospital that is part of that waiting list outside of school, you know. Schools don't tend to do real robust therapy. So a lot of people want extra therapy, child care after school in summers, potty training and ADLs all can complicate that. Again, we have different opinions and advice and ideas on what treatments to pursue and then the ABA costs and controversy. Now, like I said, all 50 states do have insurance reform, but there are co-pays and there are waiting lists. And then there's the added controversy. I did do a podcast episode on four Myths and Truths about ABA, and I do tend to have a BCBA who's also on the autism spectrum himself, and he's a special ed teacher. I did an interview with him. I've done lots of interviews with adults who are high functioning, but I say high functioning, that's even controversial because, you know, within each person are their strengths and needs. So we don't really like to talk about high functioning versus low functioning. But, you know, the highly verbal, able to converse, able to write and then accepting the diagnosis and severity level that could change with treatment, could change on its own, could change with medication. And then you get other other conditions, comorbid conditions, anxiety, depression, intellectual disability if I don't have the exact stat. I do have a video blog on intellectual disability and autism, which I probably have better stats. I'm thinking 20-30% and maybe I'm thinking in that range. But if I say something then you're like, Oh, that's really interesting. I wonder what she said about intellectual disability. Just type in Mary Autism plus your topic. So would be Mary Autism plus intellectual disability, and you'll find my video blog or the podcast or with the BCBA who also is autistic. I like to say that your name is still in the lottery for additional stressors. Even though you picked out autism, the divorce rate is still really high supposedly. You know, I don't know. I mean, I don't know if this is a great number or a great study or if there's multiple studies showing 80%, but then you have the stressors of co-parenting in different households. You also can have cancer, death of a loved one, job loss, mental health issues, elder care. I know several families who have a child with autism and the child develops cancer, the child develops diabetes, the child develops all kinds of things. And then the parents and the siblings can all know, we're only getting older. So it's not so easy for you as couples, therapists and psychologists to treat any of this because it's so multi-factorial that all. Okay, so what does turning autism around mean, which is also controversial, but people are. What do you mean, turn autism around? I don't want to turn my autism around. Autism is a gift. Well, I'm talking about delays. I'm talking about autism level three, autism. I'm talking about potty training, sleeping in your own bed through the night, going to school, keeping your clothes on, eating with utensils, talking, becoming conversational if possible, like. This isn't you know, they said, would you want to turn bipolar around? Yeah, I think I would. I mean, as a nurse, as a behavior analyst with a Ph.D., as a mom, I'd want to turn anything around that's causing suffering or pain or not functioning at the best level. So what is turning autism around? It means increasing language, reducing problem behaviors, improving eating, sleeping, potty training, and so much more. It's a four step, child friendly ABA approach based on my background as a nurse, as a mom, as a BCBA, and as an online marketer. Because as an online marketer, I know how to get my message out to the world and I'm constantly learning more about that. And my goal for each child is that they are safe, as independent and as happy as possible, and that each child reaches his or her fullest potential, which is a moving target. So the four step approach and you psychologists and couples therapists will easily identify this as basically the scientific method. We assess the problem, we plan, we teach, intervene, and we evaluate using easy data. So if you have a sleep problem, if you have a no talking problem, if you have a keeping your clothes on problem, we assess the situation, but we don't just assess the keeping the clothes on. We assess the whole child quickly and effectively and then we make a plan, etc.. And this is another diagram that I had somebody do based on. This is my whole approach in a one page document. Obviously, we're not going to go over it, but we work on language and learning skills. We work on problem behaviors which include safety awareness and major and minor problem behaviors. We work on self-care. We work on social and leisure, play safe, independent, happy, fullest potential. And then along here it's assessed and all the assessments we do plan, all the planning, we do, the teaching. We use airless teaching. We use a curriculum called the VB-Mapp Assessment and curriculum. Once we get our assessments done and then we evaluate using easy data, you know, families can only take so much data and they can only also make changes based on really good, easy data. So before we move on to the three action steps, Okay, so we do have if you have any questions, we're going to have a question and answer period at the end. But what is ABA? ABA is applied behavior analysis. It is a science of changing socially significant behavior. It wasn't invented for kids with autism. It's a science. So it's just like gravity. If you reinforce a behavior, it will go up. If you don't reinforce it, it should go down. But there's a lot of different flavors of ABA, just like there's a lot of different methods that psychologists use or couples counselors use. There's there's different ways to treat things. But ABA, you know, if a child is making progress, is happy during therapy and is happy to see the therapist or happy to go to school. And they're making progress, they are using the principles of maybe it's a science, but it's also ABA is not just a science, it's also a treatment package for kids with autism. So I use applied behavior analysis. I use Skinner's analysis of verbal behavior or the verbal behavior approach. And I use my four step turn autism around approach, which is more simplified and more step by step. And I'm going to show you some videos of some kids. And all throughout my courses, I show videos, I show examples, and we put people through the process. So I would say Skinner is the most famous behaviorist and errorless teaching is not to like if a child doesn't know this is water, not to say what is it? Or two plus two. What does that equal to pursue? The child doesn't know it. So an erroneous way to teach this would be water, water, water. And you give the child water. That's the one word up to three times strategy, whether the child says it or not. And then if they do say it, they get it on the first try. Two plus two equals four. What's two plus two? Four? So we basically give the answer and we use what we call a transfer trial to get the answer again with less of a prompt. Would this system work for an older child who was recently diagnosed at age 12? So my courses and my books work for kids and adults who are not conversational, who are functioning at a 1 to 5 year old level. So I would imagine that a 12 year old that's newly diagnosed has kind of become conversational, slipped through the cracks like not that these procedures wouldn't work. And I do have some podcasts with higher language people that could help. But in terms of like actually my book, unless they're having problems with language, with potty training, with sleep, with picky eating, you know, my book is more for kids 1 to 5, either chronologically and or developmentally. So my 26 year old is still not conversational. He's still functioning and still has trouble with some of those areas. Is there a fine line between ADHD and ASD in terms of symptoms, diagnosis, treatment considerations? Yeah, there's a really fine line, especially when the child is very small, like two or three and I personally believe I can't diagnose any of it, but I personally believe that little children under the age of five really should not be diagnosed with ADHD because I've seen it many times where the child will be five and they'll have ADHD, sensory processing disorder and speech language delay. It's like that's autism. That's not three different things. Actually, the developmental pediatrician that I that Lucas was diagnosed with, Dr. Copeland did a really good podcast interview with me a few years ago. And he never was about putting in an ADHD diagnosis on a child with autism. He thinks autism spectrum disorder really, really encompasses ADHD, sensory processing, language delays. I do think that additional diagnoses of OCD, bipolar anxiety and depression are common and probably needed for many kids, but definitely I would think over five once they're conversational, if they become conversational. How beneficial do you think are parents of children with autism support groups? Well, it was very good in the beginning, and now my local autism society that I was founded with, a small group of other women, they offer music therapy groups and movie time censoring movie time. So they're great local ones and then online ones. Kate Swenson from Finding Cooper's Voice. She has Coops troupes, which is just a few dollars a month. And it's a way to really network with other people. So I do think that it is good to either encourage people to do it locally and or online. Yeah. Level one diagnosis on the 12 year old. Yeah. So, I mean, not that there's nothing in my things that are helpful, but there are several interviews with people who are older who are functioning really well. So you could search for mary autism, teenager, level one, high functioning, and you can listen to a few things. And errorless teaching could be applied to couples therapy. Give them the answer, then prompt them, then don't prompt them. Answer: Yeah. I mean, errorless teaching is great for everybody. So there's everything in my programs that's applicable to everybody, regardless of diagnosis. Okay, so here are some three action steps. Again, not for you to actually do the therapy, but just to know kind of my approach. So actually, step number one is we always need to focus on the right things in the right order. Here's a little Jacob. I worked with him for a few years. So where is your child or client at in terms of language, leisure skills, academic, social skills, eating and sleeping problem behaviors, self-care, inclusion, safety awareness and happiness. And if they have a diagnosis, what level are they on and that sort of thing. Now, I created this one page assessment 18 years ago. It's in both of my books. The most recent book, It looks like this. Now, I have spent the last year investing a lot of time and money into creating a digital assessment based on this one page form. And you can get that digital assessment or encourage your clients of parents of children with autism or toddler showing signs to complete it at MaryBarbera.com for resource free assessment. Once they complete it, it will take them 10 minutes and they will get a print out that looks like this with three scores. And we have just launched this in the fall of 2022. So it's varied, scores aren't validated. They are pretty valid. They are pretty. If you have a child who is functioning like the 12 year old example, if you do this on your 12 year old, you're probably going to get near 100% in self care or end in language. Problem behaviors may be a problem, and in which case, if he's having problem behaviors, then the demands are too high, reinforcements too low. We do have a mini course called Turn Tantrums Around, which may be appropriate. But do the assessment, get your scores and if there's any question, you can always email us. So we take that assessment and we teach parents and professionals how to turn it into a plan based on the child's strengths and needs and create a plan. Here's Chino. I worked with him. He was only 20 months of age when I started working with him and mom was stressed. She had three kids under three. There are bilingual families, Spanish and English, living in the United States near me. She wasn't thinking about autism when I went in as his early intervention professional. I completed the STAT, The Screening Tool for Autism in Toddlers, developed by Wendy Stone in the chat app. You've heard of this. It's a series of 12 or 13 subtests. Here's the doll subtests. When she was working with Chino for a few months, I did this doll sub test here. All he has to do, he doesn't have to say anything. He just has to put the doll in the bed or feed the doll or do something. So I'm just going to show you a little clip. And this is all scripted out like the ADOS. So I can say, look at my doll. I can't say put the ball in the bed or be the doll or the dolls hungry. I could just say, look at my doll and I could give him five chances to get the doll to do something. So stirring the top doesn't count. Sucking on the bottle himself doesn't count, and even tried to sit in my little chair behind him, the little dolls. So he failed the whole test, the whole subtests. It took about 30 minutes. He had no words heard during the whole 30 minutes. He failed every sub test and got a four and four, which was the worst score he did then get on a waiting list and waited six months for a diagnosis. He got diagnosed with moderate to severe autism. I realized that every time we got to a body part, touch, body part or say a body part, he was not fluent with it. His latency was bad. So actually my dissertation is on fluency, the effects of fluency on learning. And so we put whole fluency programs in place for body parts, touching body parts, saying body parts names. And then we pushed it back in and he did so much better. So those are the kind of interactions we didn't play with dolls with him. He did have an older sister, like a year older, so she may have exposed them to dolls. He never saw that doll test again or the stat test again. But one year later, almost to the day when he was, the first video was he was just about to or on his second birthday and this was about on his third birthday. And I brought the stat back. Even though the stat is not to be used like a pre and post thing. The other thing we didn't teach him is we didn't teach him to talk in sentences. So here he is saying cocoa, but I don't understand what he's saying and he's pointing and he's trying to like, Tell me better, I'll make cocoa. Okay? And his mom made cocoa for him and his sister and. So just like the huge gains he made, he went on to do really well. He is bilingual. He is fully conversational and fully bilingual. His mom was on the podcast. So you can search for Chino's mom if you want to listen to that. But so I am trained and certified in the STAT. I actually forgot about that training and certification until I wanted to look at another client that I'm not going to show you, but I had the stat bag in my car. We knew that, you know, Chino was probably going to get a diagnosis, but I couldn't tell with th But I was like, He needs a stat. I'm like, I used to do the STAT, so I pulled it out. I'm trained in the ADOS to the autism diagnostic observation schedule, but I was never certified in that and that really needs to be done in a clinical, more sterile situation. But the STAT is great because it can be done in homes, in schools where the environment's not as sanitized. Okay. So actually, step number one is you have to work on the right things in the right order. Action. Step number two is we want to spend 95% of our time preventing problem behaviors, not reacting to problem behaviors. And I think that's going to be key when you're trying to counsel couples. So here is a video that mom took of a little girl. We have no idea what's going on. Right. We can't tell how old this girl is, what her situation is. Why is she crying? The mom just told her to get her shoes on. Does she not want to take a bath? Does she want candy? And mom told her, no, we really have. We don't know if she can talk. We don't know if she can get herself dressed, if she's potty trained, like we don't know anything about her. So offering any kind of reactionary strategy of what mom should do, there's a whole lot more we need to know. What? What is going on with this child? So this is faith. That's who was crying her. I worked with her two brothers who are a few years older than her. They both are on the autism spectrum. She was in sibling study. She got a diagnosis at two. She had another behavior analyst work with her for a year, and didn't make a ton of progress. And so when she was three, I began working with her and she didn't have like echoic control of I say this, you say that. She didn't have that, she wouldn't sit at a table for any length of time. She just wasn't cooperative. She wasn't potty trained. She had just turned three, though. But Mom was very excited about trying to potty train her because she was getting an extra bill from the daycare because she wasn't potty trained. So applied behavior analysis is the science of changing socially significant behavior. So we're always looking at improving language and learning skills while reducing problem behaviors. And basically it's two sides of the same coin. Like if I were to go on in there after seeing that video of her screaming and just worked on problem behaviors, I would have gotten nowhere. So that the two sides of the same coin just pretty much say that everybody you just need to work on 95% of your time improving things like language and learning skills so that her problem behaviors fade away. And the action. Step number three is to collaborate with other parents and professionals. I do believe that one parent needs to be the captain of the ship, and I have seen it in some of those responses about couples. Therapists are like training both parents to have both parents go hand in hand, you know, up the mountain together. That would be nice and ideal. But like usually one person is working full time and the other person is home more. And the person, you know, if one person's in major denial and the other person can read the book, like we've had interviews where that's the case, like. Like somebody just gets my book to learn themselves. I also think as therapists and counselors, I've heard stories where it's our policy that the child comes in alone and mom waits in the waiting room. And meanwhile, it's like. Yeah, that doesn't work. So, you know, we really coach our parents in our online course and community and membership to be that captain, to be that advocate, to be like no my child's two. They don't, they don't talk. I'm not sending them anywhere by themselves like I'm their voice and, and I want to know what you're doing. And if you're not pairing with positivity and like crying, if a child's crying, they're not learning. And so I'm all about like, there's not a cry it out procedure. There's not enough demand. There's nothing like that. It's all positive and child friendly. If we get crying, we want to get out of the crying and we want to learn how to prevent the crying. So my goal for both Lucas and Spencer. Spencer right now is in med school and Lucas is at home. They're 26 and 25. I want both of them to be as safe, as independent, as happy as possible, and reach their full potential. You know, safety for Lucas versus Spencer looks really different. Independence looks different, but happiness probably looks different, too. But that's my goal.

Mary: If you're a parent or professional and I have listened to this whole podcast episode, perhaps many of the podcast episodes, I am here to tell you that your next best step is to most likely join our online course and community. We have a course now for toddlers and preschoolers. We also have a course to help older school aged children who are still struggling with talking tantrums, picky eating, sleeping, potty training and so much more. The courses have very similar modules, very similar themes, but different case studies, different examples, different success stories. It is 60 days access in eight weeks. You can literally turn things around for your family or at your school in homes, helping families. Either way, it's an amazing community filled with parents and professionals from over 100 countries. i hope you check out all the details at MaryBarbera.com/courses and I hope to see your introduction in our community today.