For almost 20 years, Dr. Cheryl Tierney has been diagnosing patients by taking information from parents and talking to teachers, early intervention providers, and school personnel. As she works on a diagnosis for a child, she’s looking for more than just a delay in their development. She wants to see if the child has deficits in their social-emotional reciprocity, which may look like:
- Social sensitivity
- Repetitive behavior
Dr. Tierney knows that sleep problems affect the whole household, and that’s why she works with a family until a child’s behavior sleep disorder is improved or she can diagnose a medical sleep condition that needs intervention. She worked with Dr. Ferber years ago, and she’s familiar with his original work, and not the telephone-style version that many parents read about in magazines. Both of us agree that the “Cry it out” method just doesn’t address the child’s root sleep problem and that positive reinforcement yields far happier children and parents.
As an advocate for positive ABA therapy, Dr. Tierney thinks that the more we understand behavior and what motivates behavior, the more we can help change people’s behavior in a positive way. Dr. Tierney shares some of her favorite chapters and ideas from my newest book. If you’d like early access to Turn Autism Around: An Action Guide for Parents of Young Children with Early Signs of Autism, sign up for the book launch on my website Turn Autism Around. I’ve included book resources and assessment tools for every pre-order.
Cheryl Tierney-Aves, MD, MPH is a Board-Certified behavior and developmental pediatrician who has been in practice since 2002. She is a native of Brooklyn, New York and completed medical school at Tufts University in Boston. Her pediatric residency was at Levine Children’s Hospital at Carolinas Medical Center in Charlotte, North Carolina. She completed Fellowships in Health Services Research and Developmental Pediatrics in 2002. After 8 years on the faculty at Tuft’s Baystate Children’s Hospital, she was recruited to Penn State Children’s Hospital in 2010. Dr. Tierney-Aves is a Professor of Pediatrics in the Department of Developmental Medicine. She is an active member of The Society for Developmental and Behavioral Pediatrics (SDBP) including its Advocacy Committee. Dr. Tierney is the President and founder of the ABA in PA Initiative which is a grassroots advocacy group whose mission is to improve access and quality of ABA services in Pennsylvania. Her practice specializes in speech and language disorders to include autism and childhood apraxia of speech as well as pediatric behavioral sleep disorders.
- Why doctors must factor in the presence of comorbidities when they make an autism diagnosis.
- How Dr. Tierney makes a diagnosis using telehealth, and the special form she uses to assess her patients.
- The connection between sleep disorders and autism is so strong that Dr. Tierney does a lot of anticipatory guidance for her patients.
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— #030: Autism and Sleep: How to Improve Sleep for Children with Autism
— How to Resolve Autism Sleep Issues in Children
— #090: Apraxia and Autism: What is Apraxia of Speech | Interview with Tamara Kasper
— What is the ADOS Test?
— How to Recognize Early Signs of Autism in Toddlers Using MCHAT
— #035: Autism Diagnosis, Waiting Lists & Early Language Development with Dr. James Coplan
— How is Autism Diagnosed? Testing & Treatment Recommendations with Dr. James Coplan
Transcript for Podcast Episode: 114
Diagnosing Autism: An Interview with Developmental Pediatrician Dr. Cheryl Tierney
Hosted by: Dr. Mary Barbera
Mary: You're listening to the Turn Autism Around podcast episode number one hundred and fourteen. And today we have a special guest, Dr. Cheryl Tierney Aves, who is a board-certified behavior and developmental pediatrician who's been in practice since 2002. She currently is practicing at the Penn State health system in Hershey, Pennsylvania. And she's the president of a group called ABA in P.A., which is a grassroots advocacy group whose mission is to improve access to quality ABA services in Pennsylvania. I'm about an hour from Dr. Tierney and we have been friends for many years. Her practice specializes in speech and language disorders to include autism childhood apraxia. And she also focuses on pediatric behavioral sleep disorders. So in today's episode we cover the waiting lists. Why there are such long waiting lists, who can diagnose which specialties can diagnose autism?
Mary: We talk about some of the differences between apraxia, ADHD and autism. We also talk quite a bit about sleep and how behavioral strategies can help with sleep. And we talk about advocacy and she gives some great advice. I know I learned several things within this episode, so I'm sure you being a parent or professional will learn as well. So let's get to the special interview with Dr. Cheryl Tierney Aves.
Mary: Thanks so much for joining us today, Dr. Tierney.
Dr. Cheryl: Thank you so much for having me. Please call me Cheryl.
Mary: Yeah, OK, I will. I know you personally for years in the advocacy world in Pennsylvania. So I know I've been trying to get you on our podcast for a long time. So you have such an expertise as a developmental pediatrician and also in advocacy. So I'm sure you're going to be a wealth of information for both parents and professionals listening. So why don't you start with telling us how you fell into the autism world, how you decided to be a developmental pediatrician and kind of how you ended up here?
Dr. Cheryl: Yes. So thank you for. Thank you so much for having me. I'm very excited. Yes. We've been trying to connect for a while, and it finally worked out this evening. And I'm very excited to be here. Yeah, I've been in the field of developmental pediatrics for over 20 years, and it started when I was in my fellowship. I was in an academic pediatrics fellowship at Boston Children's Hospital in Boston. And at that time, there was no clear specialty in developmental pediatrics back then. Yeah, the specialty actually became a solidified board-certified area of expertise in 2005. So before then, you could have interest in developmental pediatrics and you could practice in your interest. But pediatricians were just board-certified pediatricians. But the first boards that came out so that you can become a board-certified sub specialist in that area was in 2005, which is the year I took the certifying exam to become a sub specialist. But during my fellowship in academic pediatrics, you had to choose an area of clinical interest.
Dr. Cheryl: And I was doing research in Boston at the time and my area of clinical interest, we had a lot of areas that we could choose from and at that time there wasn't a lot of training in pediatrics and development. It was really an area that we just didn't get a lot of training. General Pediatrics, you went through the different subspecialties, cardiology, pulmonology, those areas. But development was really not something we trained a lot in. And Boston Children's offered a clinical track for developmental pediatrics. And since I knew that I was pretty weak in that area, I chose developmental pediatrics from my clinical training during my fellowship. And I was there for three years and I loved it. I just loved it. I fell in love. So at the end of my training, which was in 2002, after those three years from 1999-2002, I had had enough subspecialty developmental pediatrics training so that when the first board certification exam came into being, I petitioned the board to be able to sit for that exam and I passed my exam and the rest is history. I was a board-certified developmental pediatrician and since then, since I've been practicing ever since and I've loved every minute of it, I never looked back and I have enjoyed every minute of my clinical practice. So that's how I came to be.
Mary: Yeah. Yeah, I had no idea because Lucas was diagnosed in 1999 by Dr. James Copeland, who I did a podcast interview with. Yes, we can link that in the show notes, he was down at Children's Hospital and he was called a developmental pediatrician, but I guess there was no board certification. It's kind of like the BCBA board. I was among the first one thousand BCBAs to get certified nationally. It's kind of like that, like the early 2000s that it was it was not like a national exam and it was just the first few groups of people. And the supervision and mentorship requirements were much less stringent back then.
Dr. Cheryl: So evolved over time. Yeah, people had interest and they basically practiced in that area. And it was very, you know, Lucy Goosey, you know, we people got all different kinds of training. It was it very consistent. But once two thousand five came and it was very strict. And just from that point forward, now everyone that trained in our subspecialty has to go through very strict training. And I was lucky because at Boston Children's, where I trained, I had gone through that stress. Training that was by happenstance because I didn't realize what I was going to eventually fall in love with, but I chose it and so I did get that training and then I was able to sit for that board certification. But many people got their training either by some less stringent standards, but then a lot of clinical practice, a lot of clinical practice. And you are now at Hershey Medical Center, is that correct? Right. So I practiced ten years in Boston at one of Tufts teaching hospitals. And then 10 years ago, 2010, I moved. I was recruited at Penn State Children's Hospital. And I've been on faculty there ever since.
Mary: OK, so I know there's a lot of confusion and there's a lot of people waiting for evaluations and diagnoses and there's a lot of confusion about who can diagnose. So can you clear that up? Who can diagnose autism or evaluate to rule out other things like apraxia or ADHD?
Dr. Cheryl: Right. So the truth is that general pediatricians in certainly in straightforward cases truly can diagnose autism because we are trained to use the DSM five criteria for autism spectrum disorder. And if a child easily meets those criteria and a pediatrician knows a child and have gotten to know the family and the child over time, it would be easy to tell that a child who meets those criteria. So in easy cases or straightforward cases, a pediatrician can certainly make that diagnosis. But that is not very common. It isn't. What has happened is that insurance companies over time have made it more challenging for families to get a diagnosis and have required subspecialists, including psychologists, neurologists, psychiatrists and developmental pediatricians to make that diagnosis and have required more specialized testing to be incorporated into that diagnostic evaluation and certainly for more challenging cases. That's important because in some cases, and in probably a lot of cases, a history alone and a brief observation is not enough to tell that a child may meet the criteria, but in some cases that are more straightforward. It certainly is my feeling that a pediatrician should be able to make a diagnosis. But some as things have kind of gotten more complicated with insurance, they're requiring more specialized testing for that and certainly more complicated situations. That testing is probably an important part of that diagnostic evaluation. Right.
Mary: And I know in my work in my new book, I talk about the screening tool for autism in toddlers. And I've also I've been trained and certified in that many years ago. And then I was also trained in the ADOS autism diagnostic observation schedule. I did video blogs on both of those tests so we can link those in the show notes as well. So the show notes for this episode are going to be at one 14. So, Mary, Barbara, dot com forward, slash one 14. You can look at anything we talk about that I say is going to be the show notes. That's where you'll find it. So additional testing includes things like the stat or the ADOS. So what other kind of tests do you often do?
Dr. Cheryl: Yeah, so in our evaluation center we use in almost all cases except in those very straightforward cases. But in almost all cases we use a combination of history that a parent presents to us. We collect information from teachers, early intervention providers, school personnel. Then on top of that, we have families fill out rating scale, standardized rating scale. So we might have them fill out social responsiveness scales or we might have them fill out the checklist for autism spectrum disorder.
Dr. Cheryl: There are a variety of others that you can use, but some standardized checklists. And then on top of that, we administer a standardized assessment. So the ADOS, of course, is the most well-known. So that's the one that most people know. But we also have been using now during covid a variety of telehealth assessments. So we've been using the Philippines, which is Vanderbilt assessment, or the BASA, which is the telehealth version of the ADOS, are the ones that we can use, which has been really helpful so that we don't slow down our work during covid and we can safely administer. And then we also include the speech and language testing as part of our assessment and in some cases, depending on the age, a cognitive assessment as well.
Mary: OK, yeah, I didn't realize that there were specific telehealth I'm learning so much, just listening.
Dr. Cheryl: So it's been great. It's been a huge learning experience for us, too. And we've gotten increasingly expert in how to use the camera and parents as part of our as the parents become part of the assessment. And we get to see kids in their natural home environment, which is great because a lot of kids don't like coming to our offices and they do not like interacting a new environment. So we get to see them how they are in their homes, which we think has been sometimes even better for a lot of kids that don't like to come in and play with our toys.
Mary: Yeah, in my book, I talk about my former client, Max, who was on a waiting list. He lives in New Jersey. At the time he was on a waiting list. He finally got into Children's Hospital of Philadelphia, where he was. He was two and they brought him there and he screamed for an hour and a half with his mom in the room with reinforcements. And they were trying to complete a stat assessment and they couldn't even complete it. They're like, we don't we can't diagnosed him with anything because he's so out of control. You know, he's having such a hard time in this environment that we really need to get some video from the early intervention professionals that work with him.
Mary: At the same time, Max's family moved a mile away from my house. I became his early intervention professional and ended up administering the stat in his home and sending those videos in. And Max ended up not getting a diagnosis because in the four months that we implemented some of the techniques, we got him responding socially. And so he managed to do really well. So why are the waiting list so long and what is the waiting list to come see you if I have a young child who I'm concerned about.
Dr. Cheryl: Yeah. So maybe that ties slightly to the answer I gave to a previous question, which is in very straightforward situations where pediatricians know the family is really well. It is certainly my opinion and the opinion of a lot of developmental pediatricians that if a pediatrician feels really comfortable placing a diagnosis because they have that longitudinal relationship with the family, we feel they should be able to place a diagnosis if the family is comfortable and the provider is comfortable. So that would take care of a certainly a smaller percentage.
Mary: And when you say straightforward, you mean that they have severe deficits, that the child is not talking. They're having, I had a two-year-old that was banging his head on hard surfaces. Out of the nine hours a day was banging for three hours a day to the point where he had a lesion on his head. He was banging so much like a child like that. Now, in that child, though, it could be something else. It could be a brain tumor. It could be. And so, like, that's not a very straightforward case either because. Right. Right. So severe that your you got to think like what else is happening. Like, what do you mean by a straightforward case? I think is a good question.
Dr. Cheryl: Yeah, that's a great question. So remember, the pediatrician is looking for that differential diagnosis. They are evaluating. And I don't think headbanging alone is a straightforward case. So I agree with you. But if you're looking at said the diagnostic criteria, you're looking for deficits in social emotional reciprocity, deficits in understanding relationships, those social deficits. Right. It doesn't have to be it does not mean that they have to have a delay in their development, because we all know that some children with autism have no delays in their development. So that is actually not one of the diagnostic criteria. Right. So they could have no deficits in their development, but they have deficits in their social emotional reciprocity.
Dr. Cheryl: And then they have they meet the what we call the part B symptoms, which are the rigidity, the social I'm sorry, the sensory sensitivities, the rigidity or the restricted interest and repetitive behavior. So when we say straightforward, we mean applying the DSM five criteria and they straight in a straightforward manner, meet those criteria. And that doesn't mean that they don't have other comorbidities. So when you say could a patient have a neurological condition or seizure disorder of some sort of brain lesion, yes, you can have more than one thing going on. But if you meet those diagnostic criteria, you can also place an autism. Diagnosis, in addition, so if a pediatrician feels that a child definitely meets those criteria in a straightforward way and have to be in a straightforward way, very straightforward and has that relationship with the family, you know, there are certainly in the United States, but even internationally there are pediatrician teams or subspecialty teams that make these diagnoses.
Dr. Cheryl: So that gets at that question of how we can reduce that wait time. Right. And then there are just not enough of subspecialties that have this expertise. Right. So when you're looking at the subspecialties that do make these diagnoses and to have that expertise, to make these diagnoses, you're talking about subspecialty areas where there's just not a lot of us. So developmental pediatricians, there are about seven hundred of us in the country.
Mary: That's it? Seven hundred. My goodness. Well, I'm very thrilled that you're spending some time with us tonight and so few of you. I always say it's not that I'm so wonderful, it's that I'm so rare.
Dr. Cheryl: And you look at pediatric psychiatrists or you look at pediatric neurologists, we're all rare subspecialties and you look at the number of children that need evaluation. It's just no wonder that wait lists are long. So that's unfortunate.
Mary: And so the waiting lists at Hershey at your center are nine months, a year, two years?
Dr. Cheryl: No, luckily, no. So, yeah. So right now we're between six to nine months for a wait for our wait times, which is great. We did just hire another provider. So it is probably going to creep down a little bit. And then I say this out loud and everyone will listen and then my wait will go back up.
Mary: It's OK. Or you do this podcast interview and that's what I'm saying. I'm going right now.
Dr. Cheryl: So we understand that my wait list before I moved here to Pennsylvania when I was in the Boston area was 18 months. So you can understand that it's not unusual for that to happen for waitlists to be over a year long. So we understand that.
Mary: Oh, I know. A year ago, probably 15 years ago, I was on a little panel group at Children's Hospital of Philadelphia. And we were talking about like having pediatricians trained to diagnose and I mean, if the psychologist can diagnose without even knowing the child over time, it does make sense that pediatricians like that would solve some of the problems. But, you know, we're not here to solve every problem in terms of waiting lists are still long. I mean, six to nine months. I compare that to you think your child might have leukemia and you're told like, OK, it's going to be a six to nine month wait. And then after you get a diagnosis now, it's going to be another six months. So you get the chemotherapy like this is. And developmentally, kids often get worse at the parents and providers don't know what to do to help.
Dr. Cheryl: Right. We do our best to really try to screen children and identify the younger children and try and prioritize younger children to get them in as soon as possible. But I'm completely with you. I mean, we try to identify children and connect them to services even if while they're waiting for a diagnostic evaluation.
Mary: Yeah, yeah. So how do you tell do the criteria in the DSM five and the ADOS said, does it really help rule out or autism versus ADHD and a three-year-old or apraxia versus autism? Like it seems like a lot of these disorders look very similar in very young children. Like at what age can you really peel that apart or can you peel it apart right away with your diagnostic tools?
Dr. Cheryl: Right. So that's a great question. Thank you for asking. The very young children for children under three, we're really focusing on diagnoses such as global developmental delay, autism spectrum disorder and speech and language disorders. As children become slightly older, we're starting to look at childhood apraxia of speech around age two and a half to three years of age. Of course, children's behavior. We're always looking at hyperactivity and impulsivity to see if there are signs that they may have ADHD and identifying needs for behavioral interventions or in rare situations, whether or not they may actually be showing early signs of ADHD in preschoolers, because we can certainly diagnose that in preschoolers.
Dr. Cheryl: But in those are kind of the general diagnoses that we're looking at in these young preschool age children. The way we kind of tease that apart is with that kind of comprehensive evaluation. So we're looking at speech and language testing and we're looking at cognitive testing. We're looking at that ADOS that or the autism testing to really kind of get a global picture of how that child is doing to be able to tease it apart. And it's interesting that you asked about apraxia, because that's one area of specialization that I have. And we start to think about that closer to age two and a half, which is kind of the earliest that we can start to really and closer to three where we can really start to identify whether somebody has that diagnosis. So we're looking at very specific tools that look at motor planning for speech.
Dr. Cheryl: So we're not really necessarily trying to tease out if something's apraxia or autism or what we're trying to take a look is does a child meet the criteria for autism? And if they do, is their speech and language deficits, can we attribute that to a motor planning speech disorder? And because that's going to help shape the treatment plan that we put in place for that child.
Mary: I did do a full podcast interview with Tamara Kasper, who's a BCBA and SLP for many years, and we talked all about apraxia, so we'll link that in the show notes as well. And she is an ABA verbal behavior expert. And her and I were basically saying, until you can get language, until you can get some echoic control, until you can, you know, especially with very young children under three, it's really if they have autism, many kids have motor planning problems and probably signs of apraxia. And the treatment is pretty much like pairing manding, you know, gaining all that kind of echoic abilities and all that stuff. And yeah. So I enjoyed that that interview as well. Another specialty in addition to apraxia. It is you also specialize in behavioral sleep disorders? And do you find I know I have done a podcast on sleep. So a chapter of my new book is on sleep.
Dr. Cheryl: Which I enjoy very much, by the way.
Mary: You like the sleep chapter? Yeah, we're going to talk about my book in a second. But, you know, do kids with autism, I mean, I think I put some stats in my book about sleep and what sets them and how the combination if you have autism, there's a very high chance you're also going to have sleep disorders. Are you finding that, too?
Dr. Cheryl: Yeah. So it's incredibly common. I would say that I almost routinely counsel on sleep hygiene and the importance of sleep routines even before sleep problems are reported to me, because the incidence of developing a sleep disorder, if you don't already present with one, is so high. It's definitely more common that by the time a family presents to me that a child is going to have sleep difficulties. So I do a lot of anticipatory guidance around sleep with autism when I make that diagnosis, explaining the risk that children have and that really having a healthy sleep routine, really counseling on the importance of good sleep hygiene and that really helping children develop those healthy sleep habits is so important so that we can try to avoid problems down the road.
Dr. Cheryl: And then if problems develop down the road, there are very interesting and unique and specific treatment modalities that we use in our behavioral sleep center that can help that help children with autism improve their sleep based on principles of ABA road. And for families that are dedicated to improving their child's sleep, we really have huge success with improving that. And by the time children come to our sleep center with sleep deficits, families are usually very motivated to fix it because if the child isn't sleeping well, the parents aren't sleeping well. And you can imagine that that is a huge motivator to change that behavior because nobody feels good when you're sleep deprived.
Mary: Yeah, and how old is a child have to be to come to your sleep center?
Dr. Cheryl: I mean, I would say that I don't know that we have a specific age, like a young age limit. But I would say that the most common age that we see is two and up. But we would see children even younger if I mean, I've seen a few kids 15 months or so, but generally, probably by the time they're referred and they get to us, they're closer to two.
Mary: Oh, OK. Well, I think that's pretty young. Does the family bring the child and actually sleep there or do you just give them tips?
Dr. Cheryl: And so when telehealth it's great because it's great because I do almost all my sleep work now is through telehealth. But we what we do, which is really unique, is that we once we do the consultation, we stay very close in contact with that family, sometimes every two to three days until the sleep problem is fixed. So it's intense work with the family until the sleep problems improved and the high risk of organic sleep disorders like sleep apnea and periodic limb disorder. So there's we really want to stay in close contact until either the behavioral sleep disorders improved or we've diagnosed a medical sleep condition that needs intervention.
Mary: Yeah, yeah. So you had said that you had like the sleep chapter of my book. And just for everybody's listening, the book is coming out. It's called Turn Autism Around and Action Guide for Parents of Young Children with Early Signs of Autism and online. It's coming out March 30th. So this this episode is you're going to be hearing this just a couple of weeks before the book actually comes out. But you can actually preorder the book and get all the preorder bonuses that turn autism around right now. So. So you want to do that because all the book resources are going to be a autism around the outcome of the assessment tools. Everything is going to be there. So you're going to want to get very friendly with autism around outcome. But it's kind of funny because people are asking me what's the difference between my first book, Verbal Behavior Approach and my new book, Turn Autism Around. And there's many differences and it's a completely different book from.
Mary: But one of the things I say in it, in the sleep chapter is when I wrote my first book, Lucas was 10 or turning 10, and he had never slept in his own bed through the night for ten years. And I had been a behavior analyst for three years before I wrote the book, four years before it was published, and my husband said to me he was a physician, he said, do not put anything about sleep in that book because like you, basically, he says he said, we don't know what we're doing. But he basically was like, you don't know what you're doing with sleep. So do not give any advice about sleep. So you won't find any information in my first book about sleep. But then because of my first book, I traveled around the country and around the world speaking on autism. And I met with just by chance, somebody took me out to dinner that happened to be a BCBA and she happened to be a sleep expert. And I used her advice, which is in the book and in the chapter on sleep. And in three nights I solved Lucas's sleep problems that I hadn't been able to solve for 10 years.
Mary: And he has slept through the night in his own bed minus times when he has to get up and go to the bathroom or if he was ill. But he's never come and slept in my bed ever again. And so it is life changing when, so now in my second book then I went on to help a lot of my clients who happened to be a lot of your patients as well, because we are about an hour away from each other just as well. So a lot of my clients came to you for a diagnosis and treatment and ongoing support, and I helped a lot of them sleep through the night with behavioral strategies that I that are outlined in my book. So you had a chance to read the whole digital copy of the manuscript, and do you want to make any comments about the whole book or sleep chapter or whatever you want to say?
Dr. Cheryl: So I'll start with the sleep and I'll do the more general. So I want to emphasize what you just said, which is and one, because of my passion about sleep. I've even toyed with when I, I turned 50 this year. So I have.
Mary: Welcome to the club. Welcome to the new decade.
Dr. Cheryl: I said 50 is definitely not the new 30, it's not the new black or whatever. But for the next 15 years of my career, I keep thinking like at some point if I slow down maybe that last decade of my career, I want to focus more on just doing sleep because I really love it. I do. And the reason is because of how quickly you can turn sleep problems around, which is a lot of what your sleep chapter and the whole book really does talk about, which is if you are approaching the problem the right way, consistently, you can see a huge shift in a short period of time. And if you have the right attitude, the right advice and you know you're doing the right thing, behavior, just like sleep behavior turns around quickly. And I really enjoyed reading that and would emphasize it was great advice. And I do think that we have similar approach in that that we're there to help make sure that we identify the problem correctly so that we can give advice about what is causing the problem. And then if you can make your shift in the behavior and you're consistent about it, it will improve.
Dr. Cheryl: It will improve. And sleep is a perfect example of that. And then to extrapolate that to the whole book, which is that you give really practical advice for families and I really appreciate that. And that's why I, I even like it better than your first book, which of course, I was a big fan of the first book.
Mary: I like it better than my first book too. And it took me like ten times longer to write it.
Dr. Cheryl: But obviously I don't know how long it took you to write. I've never written a book, so I do know people who have written books and that will never be my claim to fame because I will definitely never write a book.
Mary: But I never say never.
Dr. Cheryl: I don't know. But unlikely. Unlikely. But I can say that I think what I the practical approach that you take is really so useful. And I do, I highly recommend it. And I think that families will find it incredibly helpful for turning a stressful life experiences into positive experiences, because raising a child with autism is very stressful. Study after study has demonstrated the stress involved in raising a child with an autism spectrum disorder and disabilities. And this really gives you practical solutions to problems that will reduce stress. And I think that was as well done really well then.
Mary: Thank you. Yeah, it was a lot of effort and I knew that if I was going to write another book, I wanted it to be as big and impactful as possible. So. The early reviews from people that got to read the whole book so far have been great and some of the launch team has read the first chapter at this point or are very encouraging. So, OK, so you are a huge advocate for ABA. And out of the seven hundred developmental pediatricians in the country or the world, you're probably one of the top advocates for ABA. I mean, most developmental pediatricians understand the science and understand that ABA is the most scientifically validated treatment for children with autism. But what we're finding is also a very validated treatment for children with signs of autism and term developmental delays around term speech, language, term self-care around term sleep, around potty training, beating and getting to these kids as early as possible is just so key. But is there anything, any way we can help you kind of advocate for ABA, or is it very common among developmental pediatricians to be as into advocacy as you are, or is it the advocating for ABA as you are?
Dr. Cheryl: Well, I would say that in general, developmental pediatricians are very advocacy minded group of individuals. We get together once a year at a national conference or an international conference. We've actually met internationally as well. And we there is an advocacy subgroup, which no surprise I'm part of and have been vocal as part of that advocacy subgroup, and we actually have one person in that subgroup that is both a developmental pediatrician and a board-certified behavior analyst. And so that's been great. But I would say that we certainly are the field that understands probably more than any other field the importance of early intervention with ABA for children with autism, but also for other disabilities, and how useful it is not just limiting it to the diagnosis, but for it to be used for whatever problem behavior you're facing and that trying to uncouple it from the diagnosis to other diagnoses so that it can be useful is maybe the next step in advocacy.
Dr. Cheryl: I became very passionate about it in Pennsylvania where I live, because 10 years ago, almost 11 years ago now, when I moved here, I was involved in a different area of advocacy. I've always been involved in advocacy, but you really couldn't get quality ABA. It was very limited here. Very, very limited. You were here, but there were very few people here. Yes. And so I came from New England where we had a much more robust system and families could get it could gain access. And my children, the children that I diagnosed had much better outcomes and I just couldn't sit by and diagnose children and recommend something that they just had no access to. So I had to do something. So I started a nonprofit and started to become very deeply involved in advocating for to bring ABA and agencies and behavior analysts to our state. Obviously, you have a very wide audience and I don't want to limit it, but there certainly is a paucity of ABA internationally. I actually even spoke to providers in other countries and in Europe. I know it's difficult to get access to ABA services there, but I do think that we need to look more broadly at other countries and how they recommend intervention and try to make sure that we're helping our neighbors in Europe and in other states in the United States to bring the science where it needs to go so that children can get access to what really is going to make improve their development over time. Yeah, yeah.
Mary: And I know my new book and my work is heavily focused on young children, but also older children who have severe autism are also usually functioning in that one- to five-year-old range of developmentally. In many cases have problem behaviors, have sleep problems, have eating problems, have toilet training issues. But do you have any gave a lot of advice about parents of young children. What about parents of older children and adults with autism? Both are more impaired adults like Lucas, who's twenty-four now with moderate to severe autism and intellectual disability. And then there's also the higher functioning older kids and adults. Like is it different advice than the younger kids? Is it different advice if they're higher functioning? Like anything you would add there?
Dr. Cheryl: Yeah. So this is a obviously this is a broad question, so I'll try to be succinct. ABA is for everyone. Right. We use it in industry. I use it with my family, with my husband, with my with all my children because it's positive. It is an approach. It's a scientific approach to behavior and understanding behavior. What motivates behavior, what helps change behavior. So it works for everyone. And it's not a mystery. And the more we understand behavior and the more we understand what motivates our behavior, the better that we can help change people's behavior in a positive direction. That's what it is. There's nothing there shouldn't be anything negative about it. There should be nothing punitive about it. There shouldn't be anything harmful or negative. I want to dispel that myth. I don't promote anything negative or harmful or punishment related.
Mary: Neither do I.
Dr. Cheryl: All right. So when you're looking at it, of course, it's helpful. For older children who have more severe impairments, it is absolutely helpful for children that we consider higher functioning those with higher intellectual levels or more language function. If it just when I say higher functioning, it just means that you perceive the person with less disability. It doesn't mean that they aren't, they don't feel difficulties and that they don't have difficulties in the world. So they still need help. They themselves may feel that they don't fit in and need help managing social situations and we can help them this way. They themselves may want help. So there's definitely a place there are a wide range of other programs. We may not use the same program for everyone at different levels of functioning. So there are lots of research going on for other types of ABA, other programs that use principles of ABA. There's so much research out there. There's programs like AIM or ACT that's really gaining momentum for those types of individuals that I think really has some great research behind it. So I want to focus on the younger kids and what your work is. But there is a wide range of fabulous work being done for all levels, all language levels, all cognitive levels and for all types of people and for many different diagnoses. So, yes, would be the answer to that. The short answer is yes.
Mary: Yeah, I've heard oh, we tried ABA. It didn't work or we used to do verbal behavior, but we don't do it anymore. That's just for little kids. It's like, no, no. Everything you know is the science of ABA. I mean, there's a big umbrella and we'll focus on a form of ABA treatment that may or may not be have been done correctly or being done correctly. But everybody can benefit from ABA. It's like saying that ABA didn't work or I don't like ABA is to me like saying like gravity doesn't work. If you reinforce behavior, that's going to up or maintain.
Mary: With the sleep I just heard just the other day, some bloggers say, well, somebody told me that just let him try it out, like for 40 minutes, for an hour in terms of sleep and like he's waking up 20 times a night. And so the answer is to let them cry it out. I'm like, no, don't let them cry it out. Like, there's a reason he's waking up 20 times a night, but letting a child with or without autism scream and cry it out like I am not a fan of that. To me is not a behavioral approach.
Dr. Cheryl: Since you've mentioned cry it out, so cry it out is not a method. But I actually trained with Richard Ferber, so he was my mentor in the sleep clinic. I trained it. So I will speak from I know it's going back over 20 years, but hopefully he'll be proud of my answer. But there might certainly when you're helping a child learn a new skill, there might be some crying involved. I always say to families like crying may be a side effect of not liking something, letting a child cry as a method. It is not a method. No sleep expert recommends crying as a method of teaching anything. So Cry It Out has been mischaracterized as a method for decades and sadly, it's been perpetuated. It's kind of like a game of telephone where people say that's what the method is. And if you actually read Ferber's book, you know, that cry it out, it's not really the method, but that we can teach children to sleep well through the night. And while there may be a little bit of crying, we really minimize crying and we maximize teaching. And we there if a child spends a lot of time crying, it may be that there's an organic sleep disorder like sleep apnea or periodic movement disorder, or we may be doing something wrong in our approach and we need to change what we're doing. But by no means just any sleep expert promote cry it out as any method or endorsed method of sleep training. That is a misperception that I like to clear up.
Mary: And yeah, yeah, I'm glad we kind of jump back to that because my method is child friendly. Positive. Yes, reduced crying. I use the analogy like if I'm trying to learn a new skill, like flying a plane and then I get in, then there's one hundred buttons and you're explaining and I start to get overwhelmed and I'm like, oh my God, I start crying and you continue to teach, teach me the levers and the levers name and the point where I'm like now sobbing and hyperventilating. Am I learning anything about levers? No, I am not learning. If I'm crying and cry it out in terms of sleep. When you haven't even addressed that the child takes two-hour naps after three p.m. or the child needs his tonsils out or you know, there's a lot of factors that there's a lot of factors in letting them cry it out is like I said, like you said, a method that's not something either of us advocate.
Mary: So that's awesome. OK, so we are running out of time. It's been, I think I've learned like ten new things that I had no idea. So thank you. I'm sure the parents and professionals listening also learned a ton as well. So part of my guess goals are for parents and professionals to be less stressed and lead happier lives. Not just we're not just focusing on strategies for the kids. So I'm wondering you, as a busy professional, do you have any self-care tips or stress management techniques that you could recommend to our audience?
Dr. Cheryl: Sure. Yeah, I would absolutely say that we always have to take time for ourselves every day and that if you find that you are doing if you're going, going, going all day and there's no time for yourself, you can't be the best parent you can be. Right. So you know that saying put your own oxygen mask on first, that's really important. So even if it's a few minutes in the morning and just a few minutes at night, I really highly recommend that. The second thing is, and we did talk about it, is that if your child isn't sleeping and there are people in your house not sleeping, I highly recommend that you see a sleep expert or your pediatrician start with your pediatrician or and if you can't get help with your pediatrician, then a sleep expert next, because there is that's what we do there. Sleep experts out there. I'm one of them. And we have a whole center of sleep experts. And they're around the country, pediatric sleep experts is a subspecialty and we're everywhere.
Dr. Cheryl: And with telehealth, we're very accessible now and really get sleep under control because studies have shown that families, parents that sleep better reduces anxiety, depression and really lowers parental stress. So that's really important. And then the last thing is making sure that you have your team of professionals that are helping your child, because when you have a good professional team that's helping, that also will reduce the stress in your life. I every time I see a family and they don't have the right health in place, the stress level is a 12. And then when we help get the right team of professionals in place, we manage sleep and we work on self-care the next time or the time after that, when I see a family back, that's when we really see that stress come down. So those are the three things that I really think are super important for families.
Mary: I think they're excellent. Yeah. So I really appreciate your time and expertise. It's always a pleasure to hear new information and I'm sure our audience has gained some information. So show notes again. We'll be at MaryBarbera.com/114. And I'm looking forward to continuing to network with you and to really help children around the world to better and turn things around. So thanks so much for joining us tonight.
Dr. Cheryl: I had a great time. Thank you so much.
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