Episode 4 - What to Expect in a Diagnostic Evaluation

[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. >> Hi, Jess. Welcome back to the on time autism intervention podcast. >> Hey, Ashley. So as recap in our last couple episodes, we talked about what to do if you are apparent with concerns that your toddler might have delays in their development or that they might have autism. We really tried to hit home the message that the best first place to go is what we call birth to three. And if you miss those episodes, definitely go back for a listen and some more information on that system. >> Yes, do. >> Yeah, and birth to three is a is a general resource, not an autism specific one. So keep that in mind. Once you've been referred for an autism evaluation by your doctor or by birth to three, you might be ready to go ahead and get on weightless to be evaluated for autism. Or you might want to wait and just see how some low intensity coaching and support goes through birth to three. >> Absolutely. And last time we discussed some of the hesitancy around moving forward and some of the ways that other people and apparent and child's life can support that. So now we'll focus on if you're in the position to move forward, what's that process of diagnosis going to look like? >> Gosh, yes. Okay, don't be daunted. The timing of-- >> We're going to make it fun. >> Yeah, it's going to be fun. No, the timing of next-absis is really individual. You don't need to feel like you're in a hurry. But if and when you're ready, we want to tell you what to expect. So this episode is focused on helping families who are ready to go for a diagnosis. We want you to help you understand what that process might look like and just really demystify it. So you know what to expect, how to prepare, and maybe even how to prepare your child if needed. >> Totally, totally. So Jess, I'm going to just dive right in. Who can diagnose autism? >> So in Washington state, technically any psychologist, neurologist, or psychiatric nurse practitioner can diagnose autism. However, not all of those individuals may have the training, expertise, or experience to do so. So you have to have one of these degrees and some expertise. >> Okay, and is it there are some exception for families who are served on Medicaid? >> Yes. So for Medicaid families in Washington, there are some other pediatricians and nurse practitioners who've had extra training and are approved to diagnose ASD. So they don't have to be psychologists or psychiatrists. They can be a general pediatrician. And if they've got this extra training, they also can make a diagnosis. And this is a super interesting model and one that has a lot of potential to be helpful at increasing access to diagnosis for lots of families. >> Yeah, that's so great. So Jess, I wonder if we can pause and just take a minute and think about why, why if I'm a parent in this position, why should I get my child a diagnosis? >> Yeah, there are really a lot of reasons why a diagnosis might be important and helpful. And one reason is just to be able to better understand your child. And in particular to better understand the reasons why he or she might be struggling to do things like talk or engage socially. Most people are seeking a diagnosis because they want some answers. Answers that are going to maybe explain the challenges and answers then that will serve as a road map for helping their child to gain those skills and independence. >> Okay. So a diagnosis of autism is an answer as to why things may be challenging. And with that answer comes hopefully some clear ideas of what a parent can do to help make things easier. So how do you diagnose it? >> Yeah, it's a combination of things. So a diagnosis of autism should be based on both parent report of child's early development and current skills. And also observation by the expert of these skills. So an important part of evaluation is also having a measure of areas of development. Some diagnostic evaluators do that testing themselves. But our our on time project has recently piloted the use of the birth to three evaluations for that. So the birth to three evaluators do these really nice throw evaluations of development, just like Emily described last a couple weeks ago. And then we can use that data as the developmental evaluation. And that means that the my evaluation can be a little shorter. >> Okay. So birth to three can measure those broad areas of development like Emily explained. That's helpful. How is what you do different than? >> Yeah. So they've measured those all those broad areas of development. But remember, at its core autism is a social communication disorder. So not my time is then really spent gathering information about the child's social interests and engagement in their communication, both their nonverbal and their verbal communication. It's not only social communication, a child also has to have evidence of restricted or repetitive interests and behaviors, things that we I'll go into more detail about. >> Okay. Okay. So how do you figure out a child's skills in these areas? Is it by talking to the parent, you play with them, was it a test? What does what does it actually look like in an evaluation? >> So there is a lot of variability in terms of what you might expect in a diagnostic evaluation, depending on who you see. But for me and for most, roughly half of my time is spent talking to parents and caregivers. And finding out in detail what concerns they have. I ask very specific questions about development, about the child's social interests, their play, their communication skills, their rigidities. And I ask them about these things in different contexts. And then I want to see what these skills look like myself. >> Okay, okay. So are you, how do you know which questions to ask you're just making this up? Or are they the same across all people who diagnose autism? >> I think they're probably roughly the same. I mean, maybe we all ask them in slightly different ways. But the questions that I ask and the examples I'm looking for are really all based on something called the diagnostic and statistical manual, the DSM-5, the fifth edition of that manual. And this is a book that we psychologists use that describes all the different disorders. It has very specific criteria that must be met for a diagnosis to be made. So I can't really wing that. A child in order for me to make an autism diagnosis, they have to meet all of these criteria. So I know these criteria because I've been doing this a long time. And I have certain questions that I ask families always to probe in a hope apparent friendly way to get the information about each kid's skills. >> Okay. And what are the criteria? >> Yeah, so there are two areas of behavioral criteria that we're looking at. One is impairments or differences in social communication and social interaction. >> All right, such as? >> So verbal communication. >> Okay, so what a child says. >> Right, so communication has many different components. One of them is verbal. Like what a child is saying. And then there's nonverbal communication. >> Okay, so all the other things that communicators do, maybe with their faces, their bodies, are basically just to get their message across. Okay, so communication is both verbal, what we say using words, signs, maybe speech-generating devices. But it's also nonverbal ways of communicating using gestures or eye contact. >> Yeah, so eye contact, gestures, facial expressions. These are all the things I'm curious to know if a child uses. So I might ask something like when your child wants something. And if he doesn't have the words to express this, how does he ask for it? Does he climb on the table and try and access it himself? Does he point at the thing he wants and look at you? Does he scream? These are all forms of communication. And a toddler with out words and without autism usually has a variety of nonverbal strategies to both gain their parents' attention and then to communicate or indicate what they want to get that need met. And children typically start to point to show and to request around one year old. They understand that if I point at the thing I want, look at my parents and maybe smile, my parents will get me that thing. - Right, yeah. And the more that works for them, the more they do it. But often, children with autism, they haven't quite figured out the purpose of communication. They might not know yet that they can connect with this other person in this way. And then get them to understand their need. And instead, they still have the need or they want. And they might just look at the objects and cry because they're upset they're not getting it. But they don't go to the parent and make that clear communication or request. - Okay. And this is just an example, right? So if one of our listeners hearing this sees that same inability to communicate in their child, that doesn't necessarily mean that their child has autism, right? - No, totally. It's just one of the many things that we see sometimes. But in isolation, that's not autism. So I mentioned there's all these different criteria. So my interview with parents, I'm trying to get information from them about all these components of their child's communication and all these nuances to fill out the picture of what the child's like. - Okay. So what are the other things on the list? - So the other thing is something that we call social reciprocity. So this is the back and forth of social interaction. And young children, this can look like social imitation. So copying what someone else does or back and forth babbling, sort of smiling with a parent or a caregiver. - Okay. Can you give me some examples of the questions you ask about this? - Yeah. So I might ask things like, does your child seem pretty content to play by himself? Or does he seem to want you to play with him, right? The way toddler socialize is often through play. So I wanna ask about his interests in playing with parents, with siblings, with other children, and how he shows that interest. Does he bring toys to share and to show? Does he invite others to join him? Does he or she have favorite games or songs or play routines that he seeks out others to do with him? Is it more enjoyable for him to have other people engaging with him? Is there this back and forth thing that he does? To get people to respond to him or her? - Okay, okay. And it's also about how he responds when others invite him to play, right? So if someone starts one of these play routines, how does he respond? Does it take a lot to gain his attention? Does he run right over and join in? Will he do things to keep that game going or just kind of wander off when you stop? - Yeah, totally. So that's that reciprocity that given take of social interaction and the back and forth that we expect people and kids to have. Does he invite and respond? Or does he just invite or neither invite or respond? Again, this is just one piece of information on its own. It isn't diagnostic, but it's something that I'm gathering information about. - Okay, and are there any other areas within? Yeah. - Yeah, yeah, yeah. The last one is a little hard actually to judge in toddlers and it's a little hard during COVID, but it's differences in social relationships. So does the child play with same age peers? What do their relationships with same age peers look like? You know, we're talking about really young children here. So their relationship pool for a child under three is smaller and especially during COVID. But most children have opportunities to develop and maintain some kind of friendship or connection in this age. Okay. So you said that's the last in the area of social communication. Can you remind me what the other area is? - Yes. So the other area that we look at is the presence of certain types of behaviors like repetitive body movements, hand-flopping, rocking, spinning. There's, there's nothing bad or wrong with these behaviors. Lots of young children do these, but for some children, those who meet the other diagnostic criteria for autism, these can signal to a provider that it may be autism as a part of the constellation of characteristics that are present. - Okay. Okay. And are there other behaviors you look for besides repetitive body movements? - Yeah, we look for and talk to parents about how the child responds to change or transitions. Does this child seem to be particularly rigid or want things to be the same or a certain way every time? - Okay, hold on. Lots of kids want things to be the same or they get frustrated when things don't go the way they expect. So how do you tell when it might be autism rather than typical development for say a two-year-old? - You're totally right. You're totally right. In this case, it really has to do with the overall impact of these behaviors on the family, you know, functioning and on the child's functioning. So lots of kids really dig in their heels because they want things to go a certain way. And what I hear, I hear a lot of stories about these families who have children with autism really not being able to get in the car in a speedy way because we have to follow this certain routine or rigidity. And if I don't, my child will just melt down in a puddle on the floor. So it mostly has to do with the level, like how many of these things are present and how impactful it is on life. - Okay. - So are those all the behaviors? - There's a few more. One is that a child's might respond differently to sensory stimulation. Maybe they crave certain sensations. And by this, I mean, they want things, they're seeking out certain textures and they're clothing and their environment and their food. Or maybe they find certain senses to be really aversive. So they really struggle with hearing loud noises. And I don't like loud noises. People, lots of people don't like loud noises. This is like, again, kind of can be debilitating. Like we cannot vacuum at home or use the blender at home when the child is there because it's just so aversive. - Okay. And so what's the last one? So the last one has to do with interests. Many individuals with autism have a really intense interest. Sometimes these can be interests and things that are common. But there is usually a really heightened level of interest and something. And sometimes the cases are a top of interest might be unusual or uncommon for other children. So this is often can be things like interest in, or the fans, well, we actually heard Luis talk about fans. Sort of like an intense interest. Every time we go to Walmart, we have to go and look at the fans and we want to talk about the fans when we have language or other kind of random mechanical things or toilets or light switches or other kinds of topics. So actually, some of these interests are hard to know about until a child is really verbal and able to talk about them. But other times it's just that they're gravitating towards these things. And again, it's hard to carry on with daily life because we are always sort of perseverating or gravitating towards these things and the need to talk about or look at these things. - That's really interesting. And it kind of makes me think back to the relationships, the social and peer relationships you talked about. And I wonder too if there was a, you know, again, it's a little hard for really little ones but thinking about a topic of the interest that maybe other peers might not be able to relate to. Is that kind of a good way of thinking about it too? - I mean, and I think sometimes these things are all inters, it's sort of comingle, right? Because if I only want to talk about ceiling fans, it's, you know, hopefully I will be able to find somebody someday who's also interested in that. But it, not everybody's interested in that. And so it can be, it can really restrict, you know, your pool of people that you might be able to be friends with. And it might kind of turn people off if that's all you want to do and talk about. So that can be, that can cause some distress and be impactful. - Okay. Wow. - Wow. - I wanted to say one more thing, which is that these repetitive and restricted and sensory interests, not all children with autism have them. So the social communication criteria, a child has to meet all of those criteria. These other sensory repetitive or restricted behaviors, they only have to have a couple of these in order to meet an autism diagnosis. - Okay, okay. Whew. That's a lot to remember. So in the evaluation, do you try to get the child to demonstrate these things so you can see them? Is that part winging it? Or is there like a specific procedure that you follow? - Yeah, I do use a specific procedure and I think most people do. I use, I'm not improvising. I'm using a standard tool for this and the tool that I use is a measure called the autism diagnostic observation schedule or the eight-offs. And many people use this. But, and if they don't use the eight-offs, they should be using some standard tool or series of tasks that are the same for all children. I see and and that is specifically focused on the child's social communication and then these other skills got it. Okay. So what does the it us actually look like what will parents see happening in those diagnostic visits. Well, so I think this is this is super important. This is not you know unlike other doctors offices where kids come. This is this is this is not poking and prodding and things like that. This this feel it's a it's a play based measure. So it's a structured play based measure. I do a number of activities with the child and I'm looking to see how they respond. But mostly I'm presenting fun activities showing them toys allowing them to play with toys. And then and then coding their behaviors based on kind of what I see and how they how they interact with the toys. And in particular how they interact with the toys and their parents. So I want to see. You know when they when something fun happens in the room or do they check in with their parents to see if the parents sees this fun thing to you know and even initially like when I when I try and get them to play something with me. And they are they wary. Do they kind of look to their parents to say hey is it okay if I play with this lady that I don't know. You know, and honestly that's we kind of expect that and a toddler who's meeting a person for the first time. I mean, I don't expect them to be doing some checking them with their parents and and it's a little unusual if they if they don't. And I'm also looking for do they do they bring their toys over to show their parents do they hold them up like to say hey check it out look what look what I found. When they when when I get them going on something that's super fun. Do they request more of the activity. And if they do how do they do that. So again, we're looking for those ways that they they communicate with me. So did they say more. Do they look at me while they're saying more. Do they use the ASL sign for more. And if I stop. Do they just walk away or do they try and get me to engage. So again, this is that back and forth of of social interaction. Are they trying to get me to keep on going. So this whole thing this whole a does is really about laying out a number of activities in the same way with every child. And and looking to see how this child responds to the activities how they respond to me and how much they try to include their parent in the play. Okay. Okay. So sounds like this is what you do. But is this what every person diagnosing does is this what every parent could expect in a diagnostic evaluation. I think some level of this every parent should expect it may again not be the eight us. But, um, but a diagnosing provider should be trying to elicit these kinds of behaviors to be able to see for themselves whether or not the child meets criteria for autism. Okay. And then what would you say is the bottom line. Does every evaluation have to include gathering information from the parents and some observation of the child. Yeah, it does. Um, the amount of time that is needed to do this is is variable by child and depends for me a lot on, um, on parent input. Like I want to know from the parent how representative what I've seen is of this child. If a parent feels that, you know, in in 30 minutes, I've, I've had, I got a really good sense of what their child is able to do. And that's very meaningful. If after two hours, the parent feels like, boy, you know, he was not really showing you, um, what, what he can do or what he usually do that that's super important to you. So it's pretty variable and pretty individualized. Okay. So, um, I think parent communication with the provider is really important that you need to be telling them if you're a parent, if this represents your child's usual skills or if this really seems like an off day. Is that true? Yeah. Yeah. I think so. Sometimes a more traditional clinical evaluation will take many hours regardless of how clear your child is. And this thorough evaluation means that one practitioner can only do so many of these in a week, which frankly, it means that that lots of us have real backlogs on wait lists. So, um, and in Seattle, I hear that some families are waiting for years to get a diagnosis. And we, many of us are really looking to see if there are ways that we might be able to shorten these evaluations. And, and, and, and be more efficient. Okay. And Jess, I wonder if you can tell me based on the work that you've done in partnership with our community, birds of three providers, a little bit about the on time autism intervention or our OTAI approach. Yeah, well, I love our approach. Our OTAI approach is all about collaboration between bird to three. And the reason we highlighted bird to three in the first few episodes is because that they're really at the foundation of our, of our project. And so it's about collaboration between bird to three and the diagnostician. And so the birth to three collects information and provides it to the diagnostic, uh, diagnosing provider. And then, um, because the therapists have their own expertise in child development and greater access to the opportunity to observe the child at home and maybe in other settings. Um, that, that is a tremendous amount of rich information for the diagnosing provider. Also, if there are cultural or language differences, these providers have built relationships with the family and can augment the information that the family will provide with additional information that might be necessary to determine if indeed the child has autism. Sounds like the best possible option for families is to ask the person doing the diagnostic evaluation and their birds of three team to work together collaboratively, uh, for, you know, completing the diagnosis. Totally. That's it. That's the autism. That's our OTAI project. It's really working to figure out how we can help help other providers, um, to partner with bird to three so that they can make the diagnosis and a brief evaluation because they're utilizing that in depth. Knowledge that the bird to three team has. So they're not, they're getting as much information as they would get on their own, but they're just utilizing this team. And then the focus really shifts from to helping the families move on to start the targeted autism specific interventions. So since our project is small and newer, what would you suggest to families? I would suggest that families talk to you, whoever they're seeing, they're seen by, or the person that they're scheduling with and ask questions about what it would look like. And I would suggest that they're bird to three team members being included in some way. Ask how many visits there'll be what type of tests will be included, you know, got asked for information. Will there be an opportunity to meet and discuss the diagnosis if, if given, will I get a written report. So, so ask. The person who's going to be diagnosing as many questions as you as you can. Okay, so if I'm a parent and I am ready to move forward, how do I find someone? Good question, good question. So I, you want to sort of put all your resources towards finding finding a good person. I would go to your pediatrician and ask if they have, if they're comfortable making a diagnosis. If you think your child probably has autism and you have a really good relationship with your pediatrician, they may have had that extra training and they may be comfortable doing it themselves, particularly if you're a Medicaid family that might be an option. Or they probably have a network of people that they've worked with with other families that they refer to. So I would ask them. And then I'd also ask your bird to three provider, let them know you're ready to move forward with the diagnosis. So, who do they trust in the community to do it? The other thing you could do is check with your insurance and find out who in the community is in network to do an autism diagnosis so that you're sure that your insurance will pay for it. Okay. Yes, it seems like one of the things we hear from parents a lot is feelings of isolation after that diagnosis and it seems like I would hope anyway that it could be really helpful to have someone like your birth to three special educator or one of the therapists working with you who's really supporting you through the process who knows you knows your child. And it can help you kind of understand the diagnosis a bit more in a way that is really supportive and really paced by kind of the needs of the parent and that specific to your child. Yeah, well, we want this to be as supportive as possible and for parents to get what they need as a result of the diagnostic visits. So, what most parents want next is information support resources access to individualized there to be to help their child. I really try and encourage families to bring their birth to three providers and on the on time project. We provided some additional training to some community birth to three providers to help them really understand the autism diagnosis and to help them with that post diagnosis navigation piece and we're going to be doing more of that training. There really a lot of the community birth to birth to three providers know this information so really rallying. that team to come and be a support in the diagnostic process and then post-diagnosis, I think is really valuable. Exactly. Exactly. And this is what we're hoping to help provide through the podcast, too. So we are going to do one more episode on the diagnostic process that is a little bit more about feedback and kind of the parent response to the diagnosis. And then we're really going to start digging into what happens after an autism diagnosis. How do you navigate that time as a parent of a young child? Who are the different therapy providers? What do the therapies look like just to help get parents acquainted? So much information. We have so much to share with everybody. Ashley, thank you for spending this time. It's been a great time. It has. So let's go ahead and end our time together. Thanks for your time, Jess. Thanks, Ashley, for your time. See you next time. See you next time. Bye. Bye. 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 is for information purposes only because each child is so unique, please consult your health care professional with any specific questions. 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