59. The Evaluation Process, PDA, & More with Dr. Tay

Written By Brittyn Coleman, MS, RDN/LD

In this episode of the Nourishing Autism Podcast, Brittyn sits down with Dr. Taylor Day, a licensed psychologist specializing in neurodivergent affirming care for autistic children and their families. 

Her passion for child psychology and her focus on autism is tied to her own personal experience growing up with a brother who was diagnosed at 23 months of age.

Dr. Tay and Brittyn discuss the importance of early diagnosis and therapeutic support, with Dr. Tay sharing insights on autism diagnosis for children as young as 14 months old. They touch on PDA (Pervasive Drive for Autonomy) and its impact on children, as well as how you can advocate for your child's needs when talking with pediatricians and other medical professionals. Throughout the episode, Dr. Tay emphasizes the importance of parent advocacy and provides guidance on navigating the diagnostic process. 

CLICK HERE to download Dr. Tay’s Free PDA Support Guide!

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CLICK HERE to listen to Dr. Tay's podcast, Evolve with Dr. Tay!

Learn more about 1:1 support on Dr. Tay's website: https://drtaylorday.com/ 

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TRANSCRIPT

Hi, I'm Brittyn, a Registered Dietitian and autism sibling. I have a passion for helping parents of neurodivergent kids navigate nutrition and wellness for their child, one small step at a time. Here we'll explore practical nutrition tips, learn from top autism experts, break down the newest research, and share inspirational stories that will empower you to utilize nutrition to help your child feel their best and thrive.

Listen in while picking kids up from school, sitting in a therapy waiting room, taking a quick walk or wherever you find yourself, looking for some inspiration and a friend to guide you along this journey. This is Nourishing Autism.

Brittyn: Hello, everybody. Happy June. This is my favorite month of the year, not only because of the weather here in Colorado, but it's my birthday month, which is always so fun, and I'm just so excited to dig into some really amazing podcast episodes that we have up our sleeve for the month of June, and I cannot wait.

I am especially excited for today's episode where [00:01:00] I interview none other than the Dr. Taylor Day, or Dr. Tay, as you might know her online. Dr. Taylor Day is a licensed psychologist specializing in neurodivergent affirming care for autistic children and their families, including very early diagnosis and early intervention.

I connected with Dr. Tay on Instagram. She is just the best. She has such a fun personality, helps so many people. She's also an autism sibling, just like me, which we absolutely connected on. And I am just so excited to have her here because she's a fantastic resource for all of my clients.

She has a PhD in clinical psychology and is the CEO and founder of Dr. Tay Concierge Clinical Care. Her practice integrates the whole family approach, a process she created utilizing evidence informed principles after seeing a gap in autism care. Her passion for child psychology and her focus on autism is in many ways tied to her own personal experience growing up with a brother [00:02:00] who was diagnosed at 23 months of age.

 Dr. Tay will actually be coming inside of my membership, the Nourishing Autism Collective, to host a PDA workshop at the end of July. And if you're not familiar with PDA, we will talk about it in this episode today. But PDA is a profile of autism. It originally stood for Pathological Demand Avoidance.

But it has since been suggested to stand for Pervasive Drive for Autonomy. PDA can especially make eating difficult. So I'm really excited to have her inside of my membership to talk more about that, but we will cover that in today's episode as well.

During today's episode, we are talking all about the process of receiving an autism diagnosis, as well as touching on PDA and how that intersects with picky eating as well. It's a fantastic episode. She's such a great resource and a friend.

So excited to have her here. Welcome to the podcast, Dr. Tay.

Hello, everybody. Welcome back to the Nourishing Autism Podcast. I'm so excited to be sitting here with Dr. Tay. Thanks so much for being here. [00:03:00]

Dr. Tay: Thanks for having me. I'm so glad we've connected and that, yeah, I'm excited to share today.

Brittyn: Me too. I haven't had anyone with your credentials on the podcast before, so I'm excited for you to get to share more about this because I think a lot of parents are really going to benefit from it, wherever they are in their diagnosis journey, but especially for those people who haven't gotten one yet or waiting on one or, you know, on a wait list, whatever it might be. But before I get too far ahead of myself, tell us who you are, what you do and who you help.

Dr. Tay: Yeah. So I'm Dr. Taylor Day. I'm a licensed psychologist and I specialize in providing neurodivergent affirming care for autistic children and their families. And so what that looks like as a psychologist is not only doing the diagnosis side, but also providing therapeutic support. I work currently with kids from ages one to 12, and a lot of my training focused on the earliest diagnoses. So I'll see [00:04:00] really, really little kids, often starting at like 14 months of age.

Brittyn: Wow. Okay. I mean, at that point, at 14 months, are you, tell me about that because I think a lot of people don't realize that their child may be autistic until they're 18 months or 24 months or kind of start getting those feelers. So tell me about what that would look like for a 14 month old.

Dr. Tay: Yeah. And I think one thing is it can seem random.

Why 14 months? But there was a huge research study that came out looking at the stability of diagnosis. And so what they found is you can diagnose autism as young as 12 months of age, but the stability, yeah, doesn't start to really kick in until that 14 month mark. And so usually giving those couple extra months can be helpful, but the thing with it is,

you often hear from a lot of providers like we have to wait till age two or age three or some will even say even later. And it's not that we have to wait. It's about the provider's [00:05:00] comfortability with being able to identify often what are more nuance, you know, ways that children deviate from that neurotypical trajectory.

And so it can look like, you know, things like, I mean, we are able to say, yes, a child meets full diagnostic criteria at 14 months of age. But what that looks like is very different than, you know, a school aged child, but things like joint attention, like sharing interest, social smiling. We often see pretty clear, restricted, repetitive behaviors and those sensory differences, too, in really, really young children.

Brittyn: Mmm, that makes a lot of sense that you would be able to see, because, I mean, some, some pieces of that, I'm sure, like, the diagnostic process are developmental. And so it's like, if a 14 month old hasn't hit some of those developmental markers, you'd be looking for a lot, I mean, it makes total sense, of course.

Well, so, Exactly. The whole process, I mean, is going to look [00:06:00] somewhat different depending on when the child is getting diagnosed. So let's talk about the process of actually from the first time that a parent thinks that their child may be on the spectrum, or maybe their pediatrician flagged something from that very first moment to actually getting a diagnosis.

What is that journey and how long does that usually take?

Dr. Tay: Yeah. So I think a lot of times what happens is that parents are going to their pediatrician and that's where I always recommend starting is go have this conversation with your child's pediatrician, if you are concerned about autism. Knowing too, I always like to add this caveat and disclaimer that some pediatricians have more understanding of autism and more awareness of autism. And so I often see, you know, many times pediatricians are saying, oh, they're really young. Let's wait and see. They're just a boy. Oh, I'm not that worried. It will develop. And what I recommend parents [00:07:00] doing is. Following their, their parenting instinct.

If you're concerned, you absolutely can say back to your pediatrician, Hey, can you please make a referral if they're, you know, under age three to the early intervention system, or even just saying, I understand you're not concerned, but I am. So how can we move this process along? I would really appreciate that.

And so, yeah, that's usually where it starts. I do find interestingly, a lot of pediatricians tend to refer to what are called developmental behavioral pediatricians, which are an amazing, amazing resource, but there's very few developmental peds in the country. And so their waitlists tend to be longer.

They also, it depends. Some of them will do more in depth testings. Others won't. So sometimes then developmental pediatricians will then refer to psychology as well. And while I'm not here to say psychology is the only way you should go, get in the quickest you can. As long as you feel you know, heard by [00:08:00] the provider.

I'm a big, big proponent too on asking that provider about their understanding of neurodiversity and affirming practices. And we could talk more about that later, but you know, get in as soon as you can get on multiple wait lists, but also know if your pediatrician is saying, Hey, I'm not concerned. Most of the times you don't need a referral.

And so especially as I practice in about 40 states currently. And so I am out of network with insurance, when I'm not, you know, when you're not using insurance, you absolutely can contact providers directly. Although I recognize that's not feasible for all families, but at the same point, a lot of insurances don't always need that referral as well.

So you can call around too.

Brittyn: I think that's helpful to know because I think that that a lot of people just assume that they need that referral and then unfortunately if, you know, a practitioner isn't going to send that referral because they want to wait, then, you know, they feel like they have to wait on the [00:09:00] process, but I think what you're saying is really beneficial that if you have concerns, it's worth exploring that, even if you're not feeling supported right now, which we would hope all pediatricians would be, and so many of them are, but I also know some people, like you said, the comfort around referring out, given like that you know, the additional needs of the child. So, so that process entails, I mean, if you moved on to psychologists, then you would get the, I mean, most people sit on a wait list to get the diagnosis and they will go through the evaluation, and then there's also a little bit of lag time sometimes to be able to get the diagnosis from the time that you did the evaluation.

I know some clinics will give it like same day, but I know that that's also hard to turn around. So what does that realistically look like once you're on the wait list and then getting your diagnosis?

Dr. Tay: Yeah, I think it really depends what route you go. Developmental peds. I mean, another option is neurology.

Some, [00:10:00] you know, neurologists will assess for autism. There are some master's level clinicians that can, there's so many different ways that you can ultimately result in that diagnosis and what the wait list will look like and what their process will look like. But I do want to just comment on what a good supportive evaluation looks like, because I think that can be helpful information.

Is, it absolutely should involve time. And I know that sounds weird, but it should not be a quick in and out appointment. This is complex and you wanna make sure your child's provider understands your child and is really getting to know them. It absolutely should involve your input as a parent. If you don't feel heard and validated and like your voice matters in the evaluation process, I think that's problematic.

And that's often where I'm telling parents to get a second opinion and make sure that they are working with someone that is going to hear them because what, not only could that shape [00:11:00] the diagnosis itself, it also on the backend might change what the recommendations are as well. And then there always should be direct observation of your child.

I've heard stories of it's like, Oh, I just filled out a bunch of questionnaires. Questionnaires are amazing. They're part of my process, but no one part is the end all be all. And this is a common misconception I hear quite a bit. There is an assessment called the ADOS, the Autism Diagnostic Observation Schedule.

And in the field historically it's been known as the gold standard tool for assessing autism. There's been some shift away from that because of the neurodiversity movement and all of that. But what I do want to say is no one assessment should be the reason your child is, or isn't diagnosed as autistic.

So with the ADOS, yes, it's an amazing tool, but one, there also are other tools. So I see families exclusively over telehealth. The ADOS isn't valid over telehealth. I've been doing it [00:12:00] for a decade, but so there's other measures, but also the final results of that ADOS should not be the only piece of data saying if your child is autistic.

Brittyn: So what would be other pieces of data that they would gather?

Dr. Tay: Yeah. So, you know, the ADOS is a form of what I consider behavioral observations. I think it's amazing. It gives us a score and that's some data. I love bringing in parent report. I mean, usually my clinical interviews are like two hours long because I want to hear all the nuances about your child and spending time with you is a high value to me. And then, you know, standardized questionnaires can be really helpful. And then a lot of times, we're also bringing in an assessment of overall kind of functioning level. And what I mean by that is intellectual functioning, developmental functioning, adaptive behavior functioning, to make sure we have a broad view of the autistic child.

Brittyn: That makes a lot of sense, yeah. I'm not sure if I've told you, my mom is a psychologist. Oh, really? It's with [00:13:00] Autism for a Living. And so, when my brother was diagnosed, I mean, she had to actually really fight to get his diagnosis because that was 97, 98, when she was doing that. And she was like, "I know, at home. Like, I know he's autistic." Right. But on paper, the numbers didn't always crunch. Yeah. And so people were just doing the numbers and she was like, there's more to it than that. Exactly. And so she would actually fight to get him, his diagnosis, to be able to get him the services that he needed.

And she knew that process, but not knowing the process, it can be really difficult when you're like, this is what I'm seeing and the numbers aren't lining up.

Dr. Tay: Absolutely. We actually have that in common. My mom's not a psychologist. My mom actually isn't in the field at all. I don't know if I told you this or in our communication.

So I have a brother who was diagnosed at 23 months of age. He's now 24. And my mom had to be the squeakiest of squeaky wheels. And I think it's one of the [00:14:00] reasons that I feel so passionate nowadays about parents feeling like their voice is heard in all of this and also following their instinct because my mom didn't give up.

She kept being like, no, he needs support. And really was a fierce advocate. And, you know, it's one of the things that I've built my practice around too, is how can I empower parents to be fierce advocates in this process?

Brittyn: That's really amazing. We'll have to have like another talk about being a sibling, but it definitely, I mean, I didn't know that I wanted to be a dietitian that specialized in autism growing up and it kind of just fell into my lap perfectly and made so much sense because I'm so passionate about it too.

And so I assume that's maybe a similar journey for you too. Absolutely. So, when pediatricians, or whoever it might be, I don't want to pick on pediatricians, but that's typically who, you know, is guiding parents through this process, whenever they say, oh, they're just a boy, or, [00:15:00] oh, we should just wait and see, boys are late talkers, or whatever it might be, what do you typically say to parents when that happens?

Dr. Tay: Yeah. I mean, I think I kind of hinted at this, but don't be afraid to advocate. And, you know, here's the thing. And I actually had an amazing conversation. I have a podcast, which you're going to be on with a pediatrician who said, and so I'm going to echo his words. Don't be afraid of harming the relationship with your pediatrician.

If your advocacy harms that relationship, then it wasn't a strong relationship to begin with and your relationship with your child is way more important. And so I think ultimately it is okay to be that squeaky wheel to push back. But one, kind of free guide I have, I can share the link with you is I made a guide of kind of,

autism symptoms and traits and what that can look like. And so what might be helpful too is downloading that, reading through it, being like, does this fit my child? That [00:16:00] also gives you language then to be able to go to your pediatrician and be like, Hey, I learned about autism. Here's what I'm seeing.

Speak the pediatrician's language. I wish it wasn't like this, but I think it can be helpful. And it's not that we're trying to diss on pediatricians. I don't actually think it's pediatricians' faults. I think our medical system is very broken and I think that, you know, their training doesn't prepare them really to look at the heterogeneity or the complex presentations and differentiations of autism.

Brittyn: Yeah, absolutely. And we were talking before this got started, you were talking about high masking autism, too, and so can you tell us what that is and why that also might get in the way of maybe getting that referral or having your pediatrician be able to take you, I hate to say take you seriously, but take your concerns seriously.

Dr. Tay: Well, absolutely. And I think it's not even just pediatricians. I get second opinion consults all the time of [00:17:00] parents being told, no, this isn't autism. They look fine at school or the daycare provider's not reporting everything, or only you're seeing all of this. And so in some ways, parents are led to believe that they're doing something wrong.

But what high masking autism is, and it can happen from a really young age, is basically the autistic traits, an individual, whether it's intentional or it's just a behavior pattern that's learned over time, learns to try to fit in with those neurotypical standards. And so it might look like something, you know, your child does need to stem, but is trying to control their stems or they've been told so much they have to make eye contact. And so they're trying really hard to make eye contact and they kind of blend in. But what we know about high masking autism is these kids often come home and they're having huge meltdowns because they've had to not be their authentic selves all day long.

And this is [00:18:00] particularly true and we can go there if you want, about autistic children with the PDA profile that often is accompanied by high masking autism as well. Would you say what PDA stands for and just a little bit about what that actually is? Yeah, because it's very new in the U.S it's not a new concept,

it's been in the UK for quite some time, much more recognized there. We're just starting to see it trickle in. And it's one thing that learning in my practice has been such a game changer, but what it is, it stands for, the technical name is Pathological Demand Avoidance. The autistic community doesn't love that name because of the word pathological.

And it kind of, it makes it sound like it's only a response to getting demands. And while it can look like that, what it really is, is, and the autistic community prefers, the terminology, either Persistent or Pervasive Drive for Autonomy. It's when there's a perceived loss of autonomy or a sense of [00:19:00] control that the autistic child's body goes into fight or flight mode.

And so they're on edge, anxious all of the time, but they often mask at school because they're able to hold it together. They're able to comply with the demands. Follow the rules, all of that at school, but then there, I almost think of it like a cup inside of them. Their cup fills. And by the time they get home, they have nothing left to give and they got to figure out a way to drain it.

And so this might look like your child just bouncing off the wall, having really high sensory needs. It also could look like, you know, endless meltdowns. It could look like complete refusals. You know, it also could look like them spending, quote unquote, an excessive amount of time on screens. And we hear so much in our society about limiting screen time.

But what we know from listening to autistic adults and particularly, autistic adults that are PDA-ers is that screen time [00:20:00] is often regulatory. So it's a coping mechanism, but it can be a parent mindset shift that has to come into play.

Brittyn: Mm, I think that makes a lot of sense and, you know, I've worked with a good amount of kids who have PDA and eating can be really hard because parents, I mean, eating is hard for anybody on the autism spectrum or for most people at least,

because of the sensory aspect of it. But with PDA too, the parent is trying to expand their diet and get them to try new things. Then we see a lot of struggle happening at meal time. And so we have to approach it in the right way. And I'm also, I mean, I want to talk to you more about PDA because I'm learning so much more about how to support my clients that have PDA and help support their parents and how to help them expand their diet in the right way. So we'll have to talk about that because I really want to pick your brain about it sometime.

Dr. Tay: Yeah, I'd love to. And I think it's an important topic and I think so many parents are learning about it and feeling seen and heard and not feeling like, Oh my gosh, I [00:21:00] felt crazy this whole time.

You know, everyone's telling me it's my parenting approach, well traditional parenting strategies don't work for PDA children.

Brittyn: Right, right. Okay. Well, so I have a question kind of backing up. So you said that you are licensed in 40 states, so obviously you're doing telehealth. I mean, what does that look like? Differing from actually having an in person evaluation.

Dr. Tay: Yeah. I mean, I think there's a lot of similarities and a lot of overlaps.

And I also want to challenge that sometimes our conceptualization of what telehealth appointments look like. Parents are like, oh gosh, that can't be valid. That can't be accurate. That can't be for my child. My child is never going to sit down in front of a screen with another person. And if someone is doing it in an affirming way, which is, ultimately, always my goal. I have kids that are like, even in therapy, that are literally like bouncing around in the background where I'm like, Okay, let's go find a [00:22:00] trampoline for them or have a little girl that I see for therapy who does gymnastics during our therapy sessions. But often it's very play based too, so it's not the kid is like sitting in front of the screen answering questions with me.

I'm almost like a fly on the wall. And the parent is helping to facilitate all of that. As kids do get older, I start to do IQ testing via Zoom. But it's whether they can kind of manage that and handle that and what supports they need. Still lots of breaks, but there's a lot of measures that are validated for telehealth.

And I think one of the biggest advantages, I mean, like I mentioned, I've done the ADOS for over a decade. I've done, I mean, I've seen hundreds of families in person and the pandemic basically forced us, forced our hand and then all these measures got developed. So when I launched my practice, not only, so it's something called PsyPack, that allows me to practice in 40 states.

It's a psychology compact. When I saw that [00:23:00] opportunity, but also I saw that telehealth evaluations were working. I was like, this is how I want to build my practice. And one of my favorite things is because when your child is assessed for autism in person, they're going into an unfamiliar environment, often interacting with unfamiliar people.

I love doing it in your home. Yes, we control some of the stimuli and all of that, like I ask other kids not to be home, I ask screen time to be off, all of that. But they're often interacting in a familiar place with a familiar person, which is you as the parent, and I find it's a much more naturalistic picture of all of this.

Brittyn: That makes so much sense. And I was talking to my mom about that and she was saying the exact same thing. She was like, I mean, obviously the pandemic was awful. You know, it, we all had to experience that. For the psychology field, it was great to be able to push those things forward and also help more people get diagnoses.

Cause I also think people living in rural areas [00:24:00] that don't have access to this. The fact that they don't have to drive two, three, four hours there and then back to get their child's diagnosis, that's just not feasible for a lot of people as well. And so I think that that's amazing. Well, tell everyone where they can find you, and I will put the link to your download in the show notes as well.

So, on the podcast or on YouTube, people will be able to see it right below so they can download it. But, yeah, tell us what services you provide and how people can find you and work with you.

Dr. Tay: Yeah. So one of my biggest passions is providing free autism education. It's why I love being able to come on podcasts and share like this.

So thank you. I'm on Instagram and TikTok. My handle is the Dr. Tay with periods in between. I also have my own podcast, which you'll be on soon, called Evolve with Dr. Tay, Real Conversations Designed for Autism Parents. And then in terms of services, like I mentioned, I can practice in 40 states providing telehealth.

 I do diagnostic evaluations [00:25:00] for kids up to age 12. I have a group therapy model, which has been, oh my gosh, so amazing because parents are getting the clinical support, but also building a community simultaneously as well as one to one therapy services. I run my practice very differently.

Parents, this might sound shocking, but parents get unlimited access to me as part of working with me because I know that things don't happen in these scheduled increments and we actually end up making so much more progress faster and sooner by me having this model. So I love working with families in that way.

So I can either, well, we'll just give my website. So that is Dr. Taylor Day. You can go and learn more and you can book a free consult call there.

Brittyn: That's amazing. Thank you so much. And I can say you're a great follow on Instagram too. I've learned so much about, well, PDA is one thing that I am actively learning.

So I love the information you share there, but you just share so much great information about autism as a whole. So, thank you for all the free info that you give us. [00:26:00]

Dr. Tay: Absolutely. Thanks so much for having me.

Brittyn: Of course. Thanks everyone for listening and we'll be sure to drop all of your links in the show notes below so everyone can grab them.

Transcribed by Descript

About Brittyn Coleman, MS, RDN/LD

Brittyn Coleman, MS, RDN/LD, is a distinguished Registered Dietitian and Autism Nutrition Expert, known for her innovative, sensory-friendly feeding approach to nutrition for children on the autism spectrum. As the founder of the Nourishing Autism Collective, and as an autism sibling herself, Brittyn brings both professional expertise and personal understanding to her work. She empowers families with her expert guidance, helping children receive essential nutrients for optimal health and development. Her strategies are tailored to the unique dietary needs and sensory preferences of each child.

Brittyn's influence extends beyond her membership site through her active social media presence and her popular podcast, 'Nourishing Autism'. Her educational content on Instagram, YouTube, and other platforms has established her as a leading voice in autism nutrition, providing valuable resources, practical advice, and a supportive community for parents and professionals. 

Brittyn Coleman, MS, RDN/LD https://www.autismdietitian.com
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