Episode 1 - Autism Screening and Referral

[MUSIC] Hello and welcome to the on time autism intervention podcast, a podcast for parents of children, three and younger, dedicated to providing accurate information about autism, autism intervention and guidance for your new path. This podcast is brought to you by the University of Washington's on time autism intervention or OTAI, where a collaborative project led by the UW's Autism Center and Hearing Center for Inclusive Education. Our work is supported by the Seattle Foundation and aims to increase equitable access to timely diagnosis of autism spectrum disorder and evidence-based intervention for young children and their families. We are so glad you're here. Hello and welcome to the on time autism podcast. Our goal today and in this podcast is to provide information about autism diagnosis and intervention. We're so glad you're here. Yes, we are. I am Jessica Greenson and I'm a clinical psychologist at the UW Autism Center. And I've been working for over 20 years in clinic and research here, diagnosing and supervising others in diagnosing autism in children, three and younger. And perhaps because my babies are now teenagers, I love working with parents and their little ones. Hi and I'm Ashley Penny. I'm a board certified behavior analyst or BCBA and a research scientist for the on time autism project. And I'm also a mom of a five and a two-year-old. BCBA, psychologist, researchers, moms, what do we want to call ourselves or what do you want me to call you? Dr. Ashley, Ashley, Dr. Penny. What do you say? We just keep it casual here. So we are professionals, moms, friends and like our listeners, so many different things. But we all bring all these hats to the table when we explore more about autism diagnosis and intervention for young children. Okay, Jess and Ashley it is. So what are we talking about today, Ashley? Well, today we will be talking about the first point of entry into the world of autism for many families. And this is autism screening and referral for that diagnostic evaluation. And we're really lucky because after you and I chat a bit, we're going to be joined by Dr. McCabe. She's a Seattle area pediatrician who will talk with us about referral for an autism diagnosis. Super exciting. Let's do it. Let's get started. All right. So Jess, as a diagnosing provider, tell me a little bit about how families come to you and what they say or what they're worried about when they get to you. Yeah. Well, I think we're going to get into the nitty gritty about how an autism diagnosis is made later on. But at our clinic, traditionally families come to me because either they are worried about their child's development or someone else's. And they're following up on a recommendation to get them checked out. So most commonly parents are worried because their child isn't talking. Really by 12 months of age, most children have started to explore their voices and are making attempts to gain their parents' attention and to talk to them. They make eye contact, they're smiling. It's really easy to catch their eye and they track mom or dad around the room to try and get their attention. So if a child isn't doing this by 18 months or for sure by two years, parents usually start to get a little worried about what this might mean. And most parents, I see sort of have some internal radar that says something seems different and I'm kind of worried. Huh. That's really interesting. So would you say in your experience that most parents already have some concerns by the time they come to meet with you? Yeah. So the parents that come to see me at the autism center do have concerns. But what I have learned as a part of the on-time project is that there are a whole there's a whole other group of parents with children who are under three who do have autism, but maybe they're not yet concerned or maybe they've brought concerns to their doctor or someone else only to be told to wait and see or boys are often slow to talk or he'll catch up or it's really too early to say. Huh. Now, are these sometimes true? How do we how do we figure that out? Sure, sometimes that's true, but sometimes it's not true. And I always say it's never going to hurt to get more information now to start to explore the options because if it is autism, we know that the earlier you get diagnosed. Yeah, the earlier you can start individualized intervention services. Totally. And for this age of children, these services are not medicine or invasive procedures. They're fun, play-based. And so it's nothing to be worried about. So, Jess, what advice would you give to families who maybe don't agree with the referral that has been made or their hesitant to schedule a diagnostic appointment? What should they do? Well, there are some really good websites with information for families about the early signs of autism. There are also some scary ones. So we're going to provide you our listeners with the ones that we like. But perhaps more importantly, every child who is experiencing a delay in development like they're not talking has the amazing resource called birth to three early intervention available to them. So if parents have any concerns and call their local child file number, they will be connected with an agency near their home who will screen and evaluate their child for developmental delays within 45 days. Wow. Yeah. So our on-time project is all about working with these birth to three staff to feel comfortable screening for autism, answering questions about autism, and helping families to connect with diagnostic providers. In our center, we encourage birth to three staff to come to our diagnostic appointments and to partner with us and the family for each of the evaluation, each part of the evaluation process. And this provides more support to families as they exit diagnosis and enter the world of autism. I imagine that also really helps families feel confident in the information gathered and kind of the accuracy of the diagnosis when it's when they're coming along with a birth to three provider that they know and that knows their child and that they're comfortable with. Yeah, it's a natural support. It's an important thing happening in your child's life and it's just nice to have other people who care about you and care about your family there as a part of it to help you in the journey. Absolutely. So just you mentioned screening for ASD. Can you talk a little bit more about what that is? Yeah, there are different ways to screen for autism. The most widely used screening tool is something called the M-chat or the modified checklist for autism and toddlers. Most often screening for autism occurs during well-child visits with your child's doctor or pediatrician at 18 and 24 months or within the birth to three early intervention service model. Oh yeah, I remember filling that out with my two year old at his appointment and it was with all the other paperwork that you fill out at the beginning of pediatrician well-child visit. Yeah, well you recognize that you were filling out the M-chat because you knew what it was but when my kids were 18 months I filled out a series of questions at the doctor's office things like does your child turn when you call his name? Does your child look at when you when you do things with them that are items on the M-chat but I didn't have ever known that they were M-chat because it's just presented as a string of questions just like any other visit. It doesn't typically say anything. Oh god. Sorry, it doesn't say anything about autism or M-chat. Oh sorry. Yeah. Right okay so along with those questions that's all part of that little clipboard that you do at the beginning of those visits but then what do pediatricians do with those questions? So those are the autism screening questions. If you do not indicate things that are concerning I think the doctor just proceeds with the exam but if you check off some items that are symptoms of AST of autism then the doctor will or should ask some follow-up questions and if there are enough of these indicators that you report or the doctor sees here she she may refer you on to see a specialist someone like me who is a psychologist or a neurologist or maybe a psychiatric nurse practitioner with specialized training in the diagnosis of autism. Okay yeah these will be good questions for us to follow up with Dr. McKabe. I'm curious can anyone else prefer for a diagnostic evaluation? So that is actually kind of complicated. It depends on where the family is referred but any parent can call and ask to schedule their child for a diagnostic visit. The place that they've called might need a doctor's referral so they might need an official referral from their doctor but parents can always get the ball rolling themselves and and call themselves and find out what is needed. Okay so we've talked about what's meant by screening and how children get from screening to the diagnostic appointment. I know from parents I've talked to this time can be really frustrating and confusing and they're often worried about the concerns that have been brought up by their provider but also in the midst of being kind of thrust into this position of trying to find someone who can evaluate their child with autism or for autism. What are the common challenges? faced by families during this time and why did these challenges exist? So the challenge I hear the most about is the wait lists. They're just tend to be long wait lists to get to see a specialist. So this is really yet another reason why it's best to try and get going early when you start to have any concerns, get on a wait list, and yeah. Okay. All right. Well, sounds like time is one of the issues and this has been a really good conversation, but it is also time for us to transition to talking with Dr. McCabe. Are you ready? I am. I'm so excited. Yeah. All right. Let's welcome her. Dr. Leana McCabe is a Seattle area pediatrician with Virginia Mason Medical Center. Thank you so much for being here, Dr. McCabe. Thanks for having me. I'm really happy to be here. This is so great. So we are just going to ask a couple questions and I'll go ahead and get us started. Could you tell us a little bit about what screening and referral for an autism diagnosis looks like for the young patients that you see? Sure. So we have regular well child visits with all of our patients and starting really in the beginning, I mean, at every well visit, we are observing kids and their behavior in the office and their relationship with their parents and how they're interacting with the world. And it's nice. We don't have a huge amount of time with our patients, but it's enough to kind of get a sense for how they're doing developmentally. Starting at 18 months, we provide the Mchat screener, which is a paper screener with a handful of questions for parents where they can sort of answer questions about typical development specifically related to autism. And that happens at the 18 month visit and at the two year visit and is helpful to raise any particular concerns that come up for parents at that time. But a lot of the screening that we're doing for autism is really just sort of casual observation about how they kids are doing and a conversation with the parents about how things are going outside of our office at home in other social settings when they're interacting with other people and really trying to create a team of people who are watching and caring for these kids and wondering how are they doing socially and emotionally in their development. You were asking about the referral process. If any concerns come up either on the Mchat screener or in our own observation of the child or probably most commonly if parents actually just raise concerns about their child's development and particular concerns for autism, then we have a couple of options. There are most cities, there's a birth to three centers. So most people have access to really excellent behavioral pediatricians and evaluators who can do a deep dive into how kids are doing to their local birth to three centers. So we can start there. There's also for us located in Seattle. We have the autism center at University of Washington and Seattle Children's where we can make referrals to. And many times we will utilize our local psychologists and neuropsychologists in the community also to do autism evaluations, sort of depending on what the wait list is for people to be seen and evaluated. So there are lots of local choices. That's great. So Dr. McCabe, what happens? I'm curious if you can describe for us what the conversation looks like. If I'm a parent who's bringing my child to see you and I don't seem to have concerns about autism, I'm not asking you about autism. I might not even really know that I filled out an Mchat in the waiting room and then your team is scoring the Mchat and you're observing and thinking about my child and you start to have concerns about autism. How do you talk to me as a parent about that? What does that conversation look like? What would you say to me? Well, so part of it is kind of looking carefully through the questions on the Mchat that raised concern for us. The questions that sort of scored positively as you might say. And sort of digging into those a little bit and asking more questions. There are sort of deep dive questions that are provided for us for each Mchat question and kind of have a conversation with parents about what does that really look like for them. The other I think is asking them how much contact does their child have with other kids? What is, how might they compare to other kids that they're seeing in the neighborhood or maybe at little kickers or in the grocery store, other places where they're going and had the parent notice that maybe their child was more sensitive or more nervous or more withdrawn or having a harder time engaging than other kids. What's their relationship like with other adults? Have any other adults expressed any concern? Just trying to get a kind of a deeper sense for are there are there any pieces that may have actually raised the parents concern about their child might being a little bit different or needing further support? That makes sense. So kind of the other side of the coin and this can sometimes be true about me. Let's say I'm an anxious parent and I often have lots of questions or concerns that I bring to you and you're typically able to kind of reassure me about my child's development but now maybe my child has screened high on the Mchat and you're concerned about autism. How might you talk to me about that in that instance? Yeah well I mean I think as a pediatrician it's super important to believe that really the parent is the expert on on their child right I have 20 minutes or 40 minutes with that child every couple of months but the parent is with them all the time so I think it's super important for us to always really pay attention to parents who do have anxieties about their kid about something being off or wrong or concerning and always listen to those and certainly a flip side of that is that I spend a lot of time reassuring families that things are okay even when they're worried but sometimes that you know something that happens sometimes that I might reassure somebody and then I start to feel worried and kind of I'm on the same page as the parent and first off I think it's important to say like you know what I really think you're right that we should look into this more or hey we just did this the screening test and you're right that there are some things on here that raise my attention and let's look into this deeper you know I think it's important to remember that a positive MCHAT doesn't necessarily mean that a child has autism it means we should look into it more deeply and get other people who are experts in the field to help us evaluate and you know and start the conversation that way not like this scary I think your child has this diagnosis but let's look into this and let's get birth to three involved or let's let's have the autism folks take a deeper look here and see what we what we uncover and won't it be really amazing if we end up being able to get extra support and extra services that can help you and help us support your child in the best way that we can so I think a collaboration between parents and the providers so important parents need to be heard lots of times they need to be reassured but I think just being honest about what we see and what we're looking at and what is the MCHAT and what are the behaviors that maybe I'm seeing or not seeing in clinic that kind of raised my my worry alarm good communication is really important yeah that makes so much sense and it really really aligns well with what Ashley and I have been talking about in terms of just you know let this is about getting more information about your child and in more information is only going to be helpful in terms of finding the things that are you know the ways to better teach him or it doesn't have to be this really scary big thing yeah anyway as a provider I'm curious since you you know you get to see parents and families from the point of initial screening all the way through adolescent sometimes do you have it what what would your message be for families about this first step in their journey with autism well I think every part of parenting is learning right I mean I talk about this with even my patience of newborns are two-weekers it like every week is something different and every week your your children will teach you about what they need and what's the best way to parent them and you know it with an autism diagnosis or really any diagnosis we're on this journey with our kids and trying to figure out how do we be their best caretaker their best parent their best the best pediatrician for them and how do we get all the information we need to do the best by their kid and you know this is just one example I think of so many things that we do or we say let's get the best team involved to help teach us how to do this the right way for that child and you know it is I mean here I am a pediatrician and a mom I still read lots of parenting books about how to do it best right each of my own children requires different support and different responses and maybe even different parenting styles that they respond to best right so how do we take each of these kids and say maybe you know maybe this is an autism diagnosis maybe it's not but let's figure out how do we do this best and put our full effort into be really great adults to these kids who are growing up I love that I love that that's so great just really focusing on that individualization Yeah. Yeah. I think trying hard really to not make this scary, but make it part of the adventure that we're on in being, you know, parents to these kids. It is such an adventure. And so yeah, it's so much fun. And yeah, there's, you know, always going to be scary times and hardships and, you know, but big picture and such a fun thing. Of these little people. Well, just one more thing, which is that I think really focusing on the fact that early intervention can be so successful too. And that even though it can feel so scary, if we really get the right early intervention in place, these kids can just do awesome. And that's so important to remember. Yeah. Yeah. That's why we really emphasize the early identification. Her earlier the identification earlier we can get in there and, you know, help them be learning in the ways that are most effective for them and for sure. I'm curious. Dr. McKabe, if you can make a recommendation for me and for our listeners for families who have pediatricians who who aren't maybe doing as thorough as screening as you are or families who come to their pediatrician with concerns about kids not talking. And the pediatrician just says, oh, you know, lots of boys are late to talk or, you know, sort of don't worry about it. I feel like I hear I still hear some stories about about pediatricians that are just kind of waiting sears. Well, I think first and foremost, it's foremost, it's really important to listen to your parenting instincts, right? And much of the time parents are really right when they're worried about something not going well. And I think it's important to be direct with your pediatrician. If you have a concern, it is absolutely okay to seek a second opinion or see another pediatrician or, you know, in our office, it happens all the time that you typically see your own pediatrician for your well visits, but maybe if your kid has a rash or has a cough, you see somebody else and parents will raise development questions at those visits too. And that's okay. Raise the question when you're visiting with a different pediatrician if you want another opinion. You also can self refer to the birth to three center so it doesn't require a referral from your pediatrician. If you're interested in having the birth to three center evaluate your child go for it. You can do that on your own. And you can also get connected with local neuropsychologists who can do an evaluation in your community without having a referral from your pediatrician. So I think it's important to really trust your instincts and and it's okay. You know, as pediatricians, we know that we are not always going to have a perfect connection with every family that we care for. And sometimes there's a little shifting around where you might switch to somebody that you feel like you have a better a better connection with and that's fine. So make sure that you get the care that you feel that you you need. Thank you. That really that really helps to hear that from you. I think that helps a lot. Thank you. Yeah. Sure. Thank you so much. Dr. McCabe. Nice pleasure. Thanks. Dr. McCabe. I hope this episode has helped explain screening and referral for an autism diagnosis a little bit more for you and we'll have more information and resources available in the show notes. Just thanks for chatting today. Ashley, it's always so much fun to talk to you and I'm really looking forward to continuing in this podcast and helping families gain access to early diagnosis and intervention for their kids. Me too. All right. Stay tuned and we will see you next time. Hi. This podcast represents the opinions of doctors Ashley Penny and Jessica Greenson and our guests on the show. The content here should not be taken as clinical or medical advice and as for information purposes only because each child is so unique. Please consult your health care professional with any specific questions. Views and opinions expressed on the podcast are our own while we make every effort to ensure that the information we're sharing is accurate. We welcome any comments, suggestions or corrections of errors. This podcast should not be used in any legal capacity whatsoever, including but not limited to establishing standard of care in a legal sense or as a basis for expert witness testimony. No guarantee is given regarding the accuracy of any statements or opinions made on the podcast and in no way does listening, reading, emailing or interacting on social media with our content. Establish a doctor patient relationship. Thank you. [Music]