EPISODE 262

[INTRODUCTION]

[0:00:00] MD: Okay. We are coming to a close on our gratitude journey. We only have a couple more weeks left. But Bear Dawson knows what Miss Dogwood Dawson is grateful for. Bear, what was Dog grateful for today? 

[0:00:14] BD: Today, she was grateful for that she got a bone to eat because she ate it in literally 10 minutes. After that, she had a happy stomach with acid in it burning it.

[0:00:28] MD: Okay. That's enough. That's what we're grateful for, and here is boy-mom life in a nutshell. We have had many conversations about digestive enzymes and stomach acid. Yes, so we are grateful for Dog's joy getting a new bone and stomach acid. I hope you enjoy today's episode. Y'all are in for the treat. 

The guest today is getting her PhD soon. Not quite, but she's working on it. So the to be Dr. Lillian Thompson Brown is brilliant, and passionate, and kind, and truly changing kids' stars. I hope that you enjoyed this episode and I hope that your fuzzy friend also has a delicious bone, and good digestive enzymes, and happy gratitude journey y'all.

Hi, folks, and welcome to First Bite: Fed, Fun and Functional. A speech therapy podcast sponsored by SpeechTherapyPD.com. I am your host on this nerd venture, Michelle Dawson, MS, CCC-SLP, CLC, the All-Things PEDs SLP. I am a colleague in the trenches of home health, early intervention right there with you. I run my own private practice at Heartwood Speech Therapy here in Columbia Town, South Carolina, and I guest lecture nationwide on best practices for early intervention for the medically complex infant, toddler, and child. First Bite's mission is short and sweet, to bring light, hope, knowledge, and joy to the pediatric clinician, parent, or advocate.

[0:02:20] EF: By way of a nerdy conversation, so there's plenty of laughter too.

[0:02:23] MD: In this podcast, we cover everything from AAC to breastfeeding.

[0:02:29] EF: Ethics on how to run a private practice.

[0:02:31] MD: Pediatric dysphagia to clinical supervision.

[0:02:34] EF: And all other topics in the world of pediatric speech pathology. Our goal is to bring evidence-based practice straight to you by interviewing subject matter experts.

[0:02:44] MD: To break down the communication barriers so that we can access the knowledge of their fields.

[0:02:49] EF: Or as a close friend says, "To build the bridge." 

[0:02:53] MD: By bringing other professionals and experts in our field together, we hope to spark advocacy, joy, and passion for continuing to grow and advance care for our little ones.

[0:03:04] EF: Every fourth episode, I join them. I'm Erin Forward, MSP, CCC-SLP, the Yankee by way of Rochester New York transplant who actually inspired this journey. I bring a different perspective, that of a new-ish clinician with experience in early intervention, pediatric acute care, and non-profit pediatric outpatient settings.

[0:03:24] MD: Sit back, relax, and watch out for all hearth's growth and enjoy this geeky gig brought to you by SpeechTherapyPD.com.

[DISCLAIMER]

[0:03:39] MD: Hey, this is Michelle Dawson. I need to update my disclosure statements. My non-financial disclosures, I actively volunteer with Feeding Matters, National Foundation of Swallowing Disorders (NFOSD), Dysphasia Outreach Project (DOP). I am a former treasurer with the Council of State Association Presidents (CSAP), a past president of the South Carolina Speech Language and Hearing Association (SCSHA). A current board of trustees' member with the Communication Disorders Foundation of Virginia. I am a current member of ASHA, ASHA SIG 13, SCSHA, The Speech Language Hearing Association of Virginia (SHAV), a member of the National Black Speech Language Hearing Association (NBSLHA), and Dysphagia Research Society (DRS). Additionally, I volunteer with ASHA as the topic chair for the Pediatric Feeding Disorder Planning Committee for the ASHA 2023 convention in Boston. I hope you make it out there. 

My financial disclosures include receiving compensation for First Bite Podcast from SpeechTherapyPD.com, as well as from additional webinars, and for webinars associated with Understanding Dysphasia, which is also a podcast with SpeechTherapyPD.com. I currently receive a salary from the University of South Carolina in my work as adjunct professor and Student Services Coordinator. I receive royalties from the sale of my book, Chasing the Swallow: Truth, Science, and Hope for Pediatric Feeding and Swallowing Disorders, as well as compensations for the CEUs associated with it from SpeechTherapyPD.com. Those are my current disclosure statements. Thanks, guys. 

[0:05:37] EF: The views and opinions expressed in today's podcasts do not reflect the organizations associated with the speakers and are their views and opinions solely.

[EPISODE]

[0:05:46] MD: All right, everybody. We have an utterly beautiful guest today. Y'all, she is as kind, compassionate, and beautiful on the inside as she is on the outside. I am in awe that when I got to meet her, and too, that she said yes, and she's coming on. I have the one and only Lillian Thompson Brown, who we're claiming this in the universe in the next three years will be Dr. Lillian Thompson Brown.

[0:06:14] LB: That's it.

[0:06:15] MD: Yes. You're like, "Yay." I met her at NBASLH this past April in Washington, DC. She was doing a presentation on autism evaluations, specifically for early intervention. Y'all all know EI is like my one true love. I love working with tiny humans, I love caregiver coaching. This is why we started this entire podcast from the get-go, was to expedite research to practice, but specifically for the littlest ones, the least of these. After I get done hearing her talk Ð and when she gets excited, I'm not sure if you realize this. But when you got excited when you were talking, you kind hopped a little. It was just like really awesome to watch because Ð

[0:07:00] LB: I just did it again.

[0:07:02] MD: I know, and I was like, "Oh my God, she's so excited about her research. She hopped." I was like, "Oh, I need her. I need to meet this human." I waited for the crowd to leave, because there was a crowd waiting to talk to her, because she was awesome. Then, I kind of fan-girl'd for a moment. It's like, "You don't know me, please come on my podcast. Hi." You have no idea how many people I have solicited, and they all look at me like I'm crazy, and I am. I mean, huzzah. But she said yes, and we're here today. Lillian, thank you so much for coming on.

[0:07:40] LB: Thank you for having me. I did a little hop when you just introduced me, so you're absolutely correct. I am so excited to be here. I am so excited to be a part of this, this movement that you have going on. 

[0:07:59] MD: It kind of has become one, hasn't it? That's very cool. Oh God. Glory there. I told her before, I was like, "I love Jesus, but I cuss like a sailor, and bless the editor. They've already had edited one F bomb before we even hit like actually the real introduction. So, there's life, but yes. I met you when you were presenting on some research that you're conducting for your PhD at Ð your bio reads like the who's who of academia already. The schools that you've gone to are so impressive. Take us from the beginning. How did you learn about the world of speech pathology, and then go down this journey to getting a PhD, and your research? Okay, I get ahead of myself. Take me from the beginning.

[0:08:51] LB: Okay, thank you. I'm so excited that you're excited because I'm excited too. At the core of it, I am the little sister to an autistic big brother, my brother Rahmaan. He is non-speaking, but has managed to make it on this podcast and reach so many people. He has been a major inspiration to my life, and I've just been very grateful for that. Like I said, he's non-speaking, but I talked a lot, which you will find as we go along in the podcast. I knew when I was 16, I'm like, I really wanted to be a speech pathologist. I want to help.

My brother communicates non-verbally, but a lot of people don't take the time to understand what he's saying. I find that unfortunate, but I see such value in the way that he communicates. That led me to be a speech pathologist. I went to the University of Central Florida, and I then started working at the Center for Autism there. It was at UCF that I met for the first time a person that also had a sibling that was autistic. I was like, I don't really like that. I don't think that people should wait until college to meet somebody who someone in the family that has similar dynamic as them. 

With the help of the director there, I helped to start an organization called The Sisters Club. I started for little girls, K to fifth grade that had an autistic sibling, and that was just so beautiful. Then, when I got my masters at Howard University, shout out to Howard University, HU, you know.

[0:10:25] MD: I heard that so many times at NBASLH, by the way, and that was awesome.

[0:10:30] LB: That's right. I am a Howard-made SLP, for sure. My work there with Dr. Kay Payne, who is a lead in sociolinguistics. She's now retired, but really understanding Black American communication styles, and the biases in these assessments. I was like, "Huh, that's interesting." I really hadn't even considered it because these assessments are sold to us as a standard. From there, after I graduated, I decided to volunteer at Kennedy Krieger and start another sibling support group there, in Baltimore. I had that going. 

Then, I was an SLP for 14 years, 14 years working with all various, from the schools, and to hospitals, and clinics, and all different things. While I was doing that, I was always connected to the autism advocacy community. I ended up becoming Ð in Illinois, when I moved to Illinois, ended up becoming the chair of the Autism Speaks Young Professionals Organization. I was so blessed by the self-advocates that we had on our board, and the diversity of self-advocates: Black, Hispanic, and Indian. We had everybody, along with also allies, and siblings, and professionals.

To see the work that we could do in the community, and to see the representation, I would go out and talk to the NAACP, and would talk to alumni chapters of historically Black sororities and fraternities, and just kind of talk to them about autism, about Black churches. They would say, "Okay. Well, what about us? What is the information on our community?" I would ask the leaders in the field, the lead scientists, what about the Black community? There was just a lot of, "Well, we should, and we could, and we wish," but not a lot of actual answers. I found that very unfortunate, and a disservice to autism, the field as well.

I decided to go back to school to be the change that I wanted to see. I quit my job, and I ended up at Northwestern University in the Early Intervention Resource Group, the divine leadership of Dr. Megan Roberts, who is an absolute genius. It has been a truly, truly a blessing for me to be able to have my research focus on how to support Black caregivers of autistic children and hopefully really strengthen families.

[0:12:55] MD: Yes. Do you know Dr. Frances Burns the chair of FMU?

[0:13:02] LB: I don't.

[0:13:04] MD: I'm making notes already. We haven't even gotten 10 minutes in, and I'm making notes. Dr. Burns was and is my mentor, but I worked for her for about a year and a half as the coordinator of their clinic there. I had to walk away because my oldest needed intense speech therapy to help with spelling, and I was driving like an hour and 20 minutes one way just to go to work. Mom life will always take precedence over my career. If you're hearing that, let me say it again. It's okay to be a caregiver first and then a career person, just so you know. But her focus is on caregiver coaching and early intervention.

[0:13:46] LB: I love it. I love it. I mean, because like you said, we're caregivers. Eventually, I know that I will be the lead caregiver for my brother, so I pay real attention. Just seeing what my mom went through, and other parents, and other caregivers, it's just really important to provide family support.

[0:14:03] MD: Yes. Okay. I have to put Ð I mean like, obviously, but I have to put this on the table. When I go in and I'm working with families, I realized that I bring with me my whiteness. I know my lived experiences. I mean, I am the first one to turn magenta when the sun is high, because the Irish has outweighed the Patowatomic and Cherokee that is my lineage. I've got one kid that turns beautiful olive. The other one, I mean, we have to like lather Goose in suntan lotion. I mean, genetics, it's very interesting. 

I don't know the experiences of the families that I am working with. I was not prepared when I moved from Virginia to South Carolina, because I grew up in Virginia. Moved to South Carolina and worked there for 12 years. I started going into homes, and I'd never done home health before. I was not prepared for the interactions, and I had to reassess my therapeutic presence. Because families were Ð some families were truly afraid to disclose information to me, for fear that I would call ICE. We can go there because Columbia, South Carolina, the outskirts has a large immigrant population and a large Ð they work the fields, and then go, they follow the crops, they follow the seasons. This happens, which you don't realize that that's still occurring until you live in the south.

There was so much that I didn't know that I had to learn, so much I still don't know, but I'm unsure where to begin. Then, with respect to what is an SLP's role in giving an autism evaluation, much less a diagnosis. Because that, I feel like changes state to state. I don't really know where you want to begin with all that, but those are some of the thoughts that were running through my head. That doesn't even include the incredibly thorough outline questions that you have provided in advance. Where you want to go, love?

[0:16:18] LB: No, yes. Let's start off with just the reflection and the fact that you're recognizing like, "Hey, I have a certain perspective." I really think that that needs to be really talked about a lot more in our field. There is bias. Everyone has bias. As a Black woman, I have bias based on my lived experiences. I don't know all that there is about every culture, and I won't. I don't even know all that there is about my own culture. Recognizing before we're going into something, okay, I know that I have this bias. How am I going to ask these questions? Let's start with asking these open-ended questions, not making assumptions based upon these "standards" that are really based off a western White culture.

Let's try to see how as the family Ð just, how do you guys interact, especially in early intervention, we're getting to know. How do you interact with your child, just opening that up, and then also being transparent and saying, "Hey, I don't know everything. I want this to be parent-caregiver driven." At Northwestern, especially in our lab, in our early intervention lab, we are very focused on making sure that parents know that we know that they're the experts. We're just here to give our help to shape their expertise. Asking those open-ended questions, I think are the main thing. 

Like I said, in addition to recognizing. When you think about Ð and also not leaning so heavily. When we have these standardized tests, they say, "Okay. Well, ask the child, ask the caregiver to call their name. Okay. Well, you see their name as Robert Anthony III. Okay. Well, can you call Robert?" It turns out, they might call him Trey. You don't even know. He's not responding to Robert because the child is two and they never really called him Robert. There's three other Roberts in the house, the grandfather is Robert, the dad is Bobby, the third one is Trey. He's Trey. We all have these assumptions.

[0:18:27] MD: My son's name is Theodore. He goes by Bear. They gave him the PLS5, and they said, "The bear is hungry. You need to feed the bear." He looked at them, and picked up the food. I swear to God, he was two and a half. He looked at me, he was like, "What the hell are these people doing?" He didn't say it, but he has my face. There he is, like pretending to feed himself the food. The student was so confused, and she kept saying, "Feed that bear." He was like Ð and I was like Ð

[0:18:56] LB: I'm eating. I am the bear.

[0:19:02] MD: Clearly did not read the bio where I said his name is Ð

[0:19:10] LB: There you go. There are those assumptions. When you're talking about going into spaces, and people feeling uncomfortable, we think about the systems of oppression that have led to these people, and families feeling uncomfortable. We have to acknowledge that, and do some research too. Like I said, talk as parents and caregivers how they want to be referred. If you're a 24-year-old White girl calling this 64-year-old Black woman Sandra by her first name, that might not go over well. You might need to put a handle on that. You got to put a Miss, Mrs., Dr., whatever it is, give them that respect, and that's culturally bound. Really, really doing that research, but also being open and telling them, being very transparent. "I don't know everything. I'm hoping to learn more about your family and we're going to work on this together."

[0:19:56] MD: Yes. My grandma would have gotten a hold of her shoe and popped me if I did that to an adult.

[0:20:05] LB: Exactly.

[0:20:06] MD: Grandma had a specific set of wooden shoes from the seventies back when clogs were stylish. Also, I have her flying spot. I distinctly remember catching the Ð she could catch you as you ran through the kitchen on the back of your thighs, like it was nobody's business. That woman was quick. [Inaudible 0:20:26] just laughing, and laughing. Okay, but yes. Do you guys Ð have y'all used the Juliana Woods Family Guided Routines Based Interview?

[0:20:40] LB: That kind of leads to that second part of what the SLP's role is. Actually, Dr.ÊMegan Roberts and Dr. Aaron Kaat have launched this wonderfully huge study called Reduce the Wait. We are trying to show that speech pathologists and developmental therapists, we know that we're on the ground working with these families all of the time. We are doing the work, we are on the front line, and so we believe that we can help to reduce some of these autism waitlists by having the clinicians do the assessment. In that study, we're using Ð well, the tele autism PEDS, because it's a virtual assessment. We're using the tele autism PEDS, and we are also using the TASI, which is the toddler autism symptom interview for that program. One part is caregiver and child observation, and then the other part is the actual interview, the caregiver interview with the clinician. That kind of thing gets to that. 

[0:21:41] MD: That's my thing. Why do I have to wait two years on a referral to come through to a developmental pediatrician when I can administer the test? Why? Why is this a thing? [Inaudible 0:21:55]

[0:21:57] LB: That's exactly what we're trying to do at Northwestern. That is exactly what we're trying to do in our lab. We have 1000 children that will be in this study in Illinois. We are trying to show, there's no need to wait for these developmental pediatricians. We love our developmental pediatricians, and our clinical psychologist, but there are only a few of them. Post-COVID, it's even longer. Now, you've got children who are on a waitlists for two years. We know Ð two, three, exactly three years. We know that the first three years, we know all that neuroplasticity is there, and it is waiting for us to help to give that intervention. But we can't if the child is on a waitlist for two-plus years. Then, by the time they get a diagnosis, then they have to go on another waitlist to get resources. This is a problem. 

The sooner that we can get these children diagnosed, the better. Then, by doing a virtual assessment, we are opening up to these rural areas, families that are in the South Ð we're in Illinois, and this project is centered in Illinois. Families that are in these rural towns that are not Chicago can have access, or families even in Chicago on the south side, or the west side, or places where they have to take transportation getting from NorthwesternÕs campus, from the southside of Chicago could take upwards to an hour if you're using public transportation, even if you're not. By having this virtually, you're giving access.

[0:23:21] MD: Yes. I'm thinking, that's an hour through a lens of a typically developing individual. But if you're working with a child that has a disability, or an autistic child, the sounds, the sights, the smells, the accessibility of that is another barrier that these families are going to struggle to get to. If you're incredibly in the country, I mean, Columbia may have been the state capitol, but you went 20 miles out. I worked on country roads, in double-wides that may or may not have had floors and furniture. Transportation was not readily available to go. I mean Ð

[0:24:06] LB: Yes, exactly. Then, the child gets there, and okay, "Well, how are they going to behave? They're probably hungry." There are so many things going on there. The parent is trying to get there. They might have taken off work, their boss may not understand, depending on what they're doing. You don't know the efforts. By having virtual assessments, now, we've opened it up so that we can have more access to people and people can get off of this waitlist. That's why they entitled it Reduce the Wait. It's really just an awesome, awesome study that we're hoping more people participate in.

M [0:24:39] MD: Is there a way that people can Ð individuals, if they're listening, say they're an SLP working in Illinois right now? How do they reach out to you to get the students, the patients, the clients they're seeing to you?

[0:24:57] LB: Absolutely. On our website ei.northwestern.edu, they can see all of the projects that we have going on. But specifically, for those that are interested in being a part of Reduce the Wait, if you're already authorized as an SLP in the EI system, you can also go to our Ð you can text the word CHANGE, at 847-750-3440. That's text the word CHANGE. We will send you all the information that you need. All that information is also on our website as well.

We would just love, love, love for you to be a part of that. Especially, if you are from a community, from a historically marginalized community, from a Black and Brown community, if you speak another language, if you have anything like that, we really would love for you to be a part of this study. Because we want to make sure that we have diverse clinicians working on this as well.

[0:26:00] MD: Yes, representation. Yes. Okay. Then, my question is, as a part of this study Ð and I am not pursuing a Ph.D. currently. I feel like anybody in my world is like starting it on a Ph.D., then like, um. We did sign up for archery lessons. Okay, we're like nerdy, nerdy. What I mean like nerdy, nerdy, we've found a person and downtown Stanton in St. Virginia Ð oops, my twang came out Ð who has a dragon shop. My husband and my youngest are learning sword fighting, and the oldest and I are learning like old-school archery. But I mean, we're one step up from Dungeons and Dragons. And if you're a Dungeons and Dragons fan, I'm slightly teasing only, not really. That's where my funny money forgone. 

[0:26:54] LB: The way the world is going. you never know when the real-life Hunger Games are really going to happen. I mean, Chicago is in a cloud of smoke right now. We may need those skills sooner than later. You might be onto something.

[0:27:05] MD: I'm so happy I started pelvic floor PT again, and I laugh so hard. I would have peed a couple of weeks ago, but as I did not. Also, I'm so proud of myself when I laugh hard, or I sneeze, and I don't pee, then I shout, I'm like, "Didn't pee." My husband and both the children start clapping. Life goals. 

[0:27:29] LB: I love it.

[0:27:30] MD: Take it back, Michelle. When we go back to the research piece, because I'm not a Ph.D. student. I don't really understand how all of the research occurs. But the participants of this study, will you train these clinicians in how to do these evaluations, and then they can go forth and multiply? Because it feels like that's what's happening.

[0:27:50] LB: Exactly, yes. We will train the clinicians, they receive upwards to 30, around 30 CEUs for this training, and they will be compensated in a competitive rate. They will be compensated at the competitive rate for an EI clinician. There's just so many great incentives to be a part of this project. 

In addition to that, we have an expert team that consists of a psychologist, a speech pathologist, and a developmental therapist that are really experts in doing this, and doing assessment, and diagnosis. They will look at every single case, and because that expert team is there, and because on that expert team, there is that psychologist, all of the diagnoses will be Ð and should be acknowledged by insurance. That is what's really cool about it. It's not just like, "Oh, we're just seeing it." It's also, the parents and caregivers can use this diagnosis and really get off the waitlist and take this to their local providers if they want. If they don't want, they can stay on the waitlist as well. But it's just, again, offering this opportunity to more people to get them resources and services.

[0:29:02] MD: Yes. Okay. This is my follow up question. I'm going to preface this. This is actually really personal. I honestly thought you were like 26. When you tell me that you've practiced for 14 years, I'm like, "What did you do? Go to school when you're like a high school?"

[0:29:18] LB: I graduated very young.

[0:29:21] MD: Yes. Yes. For those of us that are a fair bit older, and have gray hair, and Botox, thank you very much. I went to school with and was taught, because of that moment in time. So let's set the stage, I was taught autism is a disorder or disease that has to be corrected. Now, we know it is not a disorder or disease, it's a difference, and what a beautiful difference it is, right?

[0:29:52] LB: Absolutely.

[0:29:54] MD: But having to turn that tide within our profession, having to turn that tide within those of us that are my age, and older, and learning a new skill set, which we can. We can learn new things, we can do the hard things. Thank you, Glennon Doyle. How does that neurodiversity-affirming movement play into getting the diagnosis? Is that conversation being had there? Where are we in that world?

[0:30:28] LB: Yes, definitely. We definitely even in our training, we focus on using strength-based language. Because for so long, this has been this deficit medical view of this. I really just think in general, the acknowledgment, that different is okay. It is okay to be different. We are all different. How can we as clinicians get these children the support for themselves? Not based on how I may develop on it, on how they may develop. That is in a neurodivergent way, as well as a culturally responsive way, all of those things. Because there are people, there's Ð thinking about the gender bias in autism research, the racist histories of autism research, thinking about all those things, and realizing that all of these things that make us different are good. 

We need to see how we can use these differences to support these children and families. I think that that is the key, is really using the differences, and letting them, the caregivers, and the children lead. Not trying to make them behave in a certain way or have a certain amount of eye contact for a certain amount of time. This is listening to the self-advocates that are on the frontlines telling about their experiences, and being in constant communication with families to see what is appropriate, that is case specific.

[0:31:53] MD: Yes. Okay. Then, I have a question on Ñ yÕall are pulling so many different individuals from so many backgrounds Ñ do you see different cultural responses to an autism diagnosis? Is there different approaches? Because I've experienced different experiences, but I didn't know what y'all had picked up on, or were you documenting trends, or doing any data in that?

[0:32:25] LB: Yes. We've just launched this project. This project is new, so we're really kind of just seeing what develops. We know that there are differences in just general autism. Unfortunately, now, there's not a lot of research in cultural variation in autism research, but we know that there are differences in stigma, especially. In community education, who gets these resources in these community, the community education? Those things, those components shape how a reaction might be. Again, that's why it's so important to really use that strength-based language, and let people know that this is just the Ð it's a difference, and this is not the end all be all. This is just telling us how we can help your child, and what we need, what strategies we may need to use to try to help your child live their best life.

With my study, I'm currently looking at the Black caregiver perspective and seeing what Black caregivers, how Black caregivers are describing their child, and what they're saying during this. Not only how they're describing, but the reason that they're attributing to some of the behaviors that their children that may be diagnosed as autistic have. For instance, they may say, "Oh, my child, really, he learns so much or she learns so much from the TV." [Inaudible 0:33:43], they learn so much and they find out, yes, they've memorized all the commercials, they've memorized all the cartoons. 

Even with my own brother, that's what my mother has said, "Oh, yeah, he started talking. He was memorizing all, saying all of the Coca-Cola commercials." It's like, "Yes."

[0:34:00] MD: Descriptive of false language.

[0:34:04] LB: Exactly. Like, "All right. Well, great." Just saying that, "Hey, well, that might be a characteristic of autism." How they're communicating is Ð just having that knowledge of that cultural variations there may be. I mean, that's why it's so important, and that's why it's really unfortunate that in the history, I think they did Ð there was a study that was done, and they looked over 27 years of autism research up until 2017. They showed that only 25% of those studies actually reported anything about race or culture. That blows my mind, especially with autism.

When we think, especially as SLPs, again, talking about the roles of SLPs in the diagnostic process. When we think of social and communication, how is social and communication not impacted by culture. It's impossible. You can't say that your social interactions aren't shaped by your culture. You can't say that your communication is shaped by your culture. The fact that we're Ð it's kind of like, "Oh, yes. We know that there are some differences." "Okay. What are the differences? Can we do the research? We cannot have evidence-based practice without evidence."

[0:35:18] MD: Yes. I'm pretty sure if you go on the land of Instagram, or the Tik of Toks, you'll find a reel, and somebody's going to know an answer to something, and summarize it in 30 seconds and now they're subject matter experts. But, not, no. [Inaudible 0:35:35]

[0:35:37] LB: No dig on TikTok. I love TikTok, shout out. I have my Ð The Speech Scientist, who's on TikTok. This is why I'm trying to be on there to hopefully negate some of what is going on and bring some Ñ

[0:35:49] MD: Okay. I have an idea then. Let me formally introduce you. Because I got to be honest, y'all. I don't know if you've been to the land of the Instagram to see what First Bite has done lately. But Erin and I Ð I got my ira up, and if y'all aren't from Blue Ridge, you may not have heard the word ira. But ira is a hot mad. It is like seething, boiling, festering, oof, oof. Anyhow, I got my ira up, because I am so frustrated with social media.

From the lens of a mom, when I see things that are being published, that in my deepest, darkest, scariest hour when I am worried about my children, because Bear couldn't hear for so long, and he had to have a lot of therapy. Goose had a concussion in kindergarten, the end of kindergarten because of some bullying. They didn't mean nothing by it, they were Ð he got put in a headlock, and fell back and hit his posterior occipital lobe. Again, like visual-spatial integration issues. Spelling was hard because words Ð whatever.

When I got on social media through that lens of a mom, I couldn't not turn that off where I'm trying to seek answers. But I'm trying to look for scholarly answers. But when I'm on there now, and I see people summarizing research or miss representing research, because they're trying their hardest, but bless them, they're re focusing on Ð they're hitting the beat to the words that are hopping up on stage, without understanding the meaning of the message, and the meaning of the research that's being transitioned. Anyways, we got sick and tired of it, so we're doing something different.

Let me formally invite you for Research Wednesdays. So we're hosting two Research Wednesdays a month on First Bite on Instagram. where we invite the researcher to come on and share their research and their goals. That way, the message does not get muddied in the water.

[0:37:51] LB: That would be so amazing. I mean, I absolutely accept. I mean, yes, yes, yes. That would be great. That's why I started my TikTok. There's so much gatekeeping, especially as a Ph.D. student, this is why I came. I really applaud Dr. Megan Roberts for the work that she does. She is a clinician scientist, heavy on the clinician. We are committed to having research that is practical, and people can actually use. But we have to get it out to the masses. It's so much easier to look at a TikTok or a reel than it is to Ð first of all, half these research journals are protected, and you have to pay $49.95 in order to read one article. Who is going to do that? No, I'm going to go on TikTok which is absolutely free, and swipe, and do a hashtag search, and see what I can get. Or go on Twitter and see what I can find.

It's our job as clinicians, as researchers to really get this out to the masses. We want this out. As a Northwesterner, we want this out to the clinicians. As clinicians, we want this out to our community, to our caregivers, our teachers, doctors, and whoever is working with this with our families, so that we can really get it out. It means nothing if I write this very hoity-toity research, very academically rigorous research that is statistically sound, and nobody sees it. Nobody sees it, but each other, other researchers. 

Okay. How does that help? It does not help. We need to move this forward. We want to push the needle forward. Thank you for the work that you're doing. Thank you for this podcast, and all the work.

[0:39:29] MD: We try. We're doing our part. Huzzah. 

[0:39:33] LB: We're doing it. That's a movement. It's a movement. 

[0:39:35] MD: It's a moment. My topics are so varied. It's very representative of how my brain pinpongs between 400 different things at once. Because I'm like, "Oh, that's great. This is fun." But now, I have a question back to the actual billing piece, because I know somebody has just processed everything that we've said, and thought, "But can I actually bill for when I do this assessment? If I don't have a psychologist on the team, how do I get that validated or do I need a psychologist in order to get the diagnosis?" Those are multiple questions that I word vomited. I'm sorry.

[0:40:11] LB: Yes. It definitely depends on where you're located for sure. We know that it is in the ASHA scope of practice that we can do these assessments. But, that's why with our study, we know that it will be verified because we covered all bases, because we will have a clinical psychologist. Even though the developmental therapist and the speech pathologist are doing the main assessments, the clinical psychologist, and the expert team of this developmental therapist and speech pathologist there are looking over each case. Because they're looking over each case, there will be a group of people looking over each individual case. That psychologist allows it to be billed as it typically would. That I think is what helps, yes.

[0:40:56] MD: Folks, if you're listening, let's just put a couple things out into the universe. Each state interprets IDEA Part C, the special education law differently. Okay. If we're to step back and look at it, if we look at the South Carolina model, which I will be the first to throw out there is utterly broken. They have non-licensed, non-certified individuals acting as the early interventionist, or at least they do as of June. These individuals are tasked with administering the five-domain test, which, when you read the inside description of those five domain tests, they don't meet the bare minimum standard requirements to administer, score, or interpret these tests. Let that just wash over you, and get your ira up, and then pull up your big girl britches, call Kelly Caldwell and volunteer your time and talents to make that right. Kelly, you're welcome. 

 Okay. In different states, those five domain tests are administered. Say you're in Virginia, those five-domain test, and those five domains; gross motor, fine motor, cognition, self-help skills and language are administered by a licensed professional, such as a licensed certified speech pathologist, physical therapist, occupational therapist, teacher of the deaf, teacher of the visually impaired, or a special education teacher. Maybe specifically geared for EI, but they could be education major, psychologists, something of that nature.

Then, you go to other areas, I believe it's in Kentucky, where they have a one individual administering the assessments, and then different individual snapshot in and out to do the actual interventions. It's not like a dynamic team. I say all this because we have no consistency across the union, and how children even get into early intervention, while that runs parallel to these ASD evaluations. 

Big picture, as clinicians, we should also be advocating for uniformity and practice. Such that if one child moves, because families move, they're going to have a consistency and best quality of services that are rendered. Because, I don't know about you, but I don't feel too good when a PT is assigned to a case, and the child's got a significant language delay. The PT is Ð

[0:43:27] LB: Absolutely.

[0:43:29] MD: Yes. If the PT is the sole responsible individual. If the PT is there working on gross motor stuff, you do you. That's amazing. But that's another thing that Ð I say all this because these are big pictures that influence the interactions of our caregivers. Their experiences even getting to us. What are they bringing? What traumas have they gone through? With that being said, when you have the caregiver with you, what are we doing to coach them? What strategies? What's being said? How can we be culturally responsive? As my youngest sister would say, help me be more gooder.

[0:44:16] LB: Yes. Of course, I want to acknowledge what you said about the uniformity first. I really think we are hoping the studies in Illinois for Illinois children and families. But we are hoping that the results will have a ripple effect across America, and what we can do, especially for our field, and what we see. Thank you for that.

In terms of strategies, there are so many Ð there are quite a few strategies. We use the ECLECTIC Framework by Fujii and Bordes Edgar. It just kind of breaks down different strategies. It's a strategy. It's an acronym for the types of things that we can look for during Ñ to provide culturally responsive strategies. For instance, one of the things that we really can think of is the L in ECLECTIC is for language and language proficiency. We think about the language that we use. We know as SLPs, we're talking to caregivers, we say, "AAC." Okay. Well, we say AAC. Well, what is AAC? We're talking in acronyms. We even write down AAC. That's still not very clear. What is it? Alternative? Augmentative? What does that mean?

Using language that is the cleanest way possible to explain something is going to be helpful. Also, doing that, what I was talking about before, asking those open-ended questions ahead of time and saying, "What language are you most comfortable with?" Even if they may speak some English, they may be more comfortable in another language. So getting those interpreters, like let's get some interpreters in here, so that we can really help to support these families, and so that they can feel a little bit more comfortable. Then, one of the EÕs is thinking about the economic standpoint, and that we come in with our big super-duper bags of toys, and we plop them down, and then the families. Then, as soon as our session's up, we collect all of the toys, and then we go, and then the families might not have any toys in the home. Is that really culturally responsive? Are we really Ð how is this helpful? How is this helpful for the child?

[0:46:28] MD Can I roar? Roar. I draw? Okay. I went through at FMU, and pulled out every single deck of flashcards when I was there, and they all thought I was crazy. Bless, bless Dr.ÊBurns for supporting me in this. I pulled out all of these things, and was like, "No, you have to meet them where they are. We are more than flashcard clinicians."

[0:46:52] LB: Exactly.

[0:46:52] MD: I mean, I am all about good game of cards, but no. Also, everything you just said, I want to shout from the mountaintops. If you are in early intervention, leave your bag of tricks at home. 

[0:47:06] LB: Thank you.

[0:47:07] MD: It is your brain, it is your soul, and your therapeutic presence that you go into that home with, and you build those caregivers up. Here's my favorite math. How many hours are in a day? Twenty-four. How many days in a week? Seven. When you do the math, that ends up being, I think, 168 hours if my math isn't too rusty. Then we get one hour with them. Am I right? Is it 168? I think it's 168. Then, if we get one hour a week with them, you are a clinician, and not a magician, the 167 hours, the caregivers are with them. Whether that be their teachers, their aides, their parents, their grandparents, their foster parents.

It is how you build up that caregiver in that one hour that impacts the rest, and you can't do it with a bag of toys. If you truly go in the home and they have nothing, then the onus is on us as the clinician to work with that child's team to put resources in the home. But that is also within the framework of IDEA Part C and predicated on Maslow's scale of hierarchy of needs. Thank you. So no toys, no toys in the home. Boom. Yes.

[0:48:15] LB: That's why we do the Individualized Family Service Plan. This is the other thing about being culturally responsive, is what are the priorities of this. It's not your priorities. What are the priorities? Even if you don't agree with some of the things, what are their priorities? In one of my study, I was talking about so many of the families were mentioning Ð sorry. My study is a qualitative study, and so I look forward to talking about it and research day. It's more descriptive. The families were saying, "I really just want my child to talk. I want my child to talk." We could say, "Oh, no." 

I know as an SLP, there are so many great ways to non-verbally communicate. I talked about how I love how my brother communicates non-verbally. There are ways to communicate. However, if this is what this family's priority is, being respectful of, okay, this is what the family Ð you don't know, especially in terms of differences in culture. If a little Black child is not able to communicate, and they grow up, and they become an older Black child, a teenager walking down the street, and the police pulls them over. Are they going to wait to see if the child is autistic? No, they may not. 

The parents may have a deeper priority than what you might be thinking. It may go deeper. There are some things where they may need to say, "Hey, please don't shoot. Don't do anything. Please, let me just explain myself." But they can't say that. It is important for the children to be able to communicate with them. I guess, that listening, having that understanding of cultural priorities on an individualized basis, and not going in there with those assumptions that the parents are just ableists, and they don't understand. No, there might be some other things, and how can we help to work with these families to help this situation?

[0:49:55] MD: Okay. Wait, is there an organization in Chicago where caregivers can call in when they have a diagnosis, and like have that listed in affiliation with their address?

[0:50:09] LB: Yes, there are several organizations in Chicago. I know the Autism Program of Illinois is the one that we recommend that can kind of connect you with different resources. But there are quite a few. Obviously, not enough, and depending on what areas that they're in. I'm not sure of the waitlist. But each of when Ð in our Reduce the Wait study, each of the families that gets a diagnosis, even those that don't, they get a packet of some resources that they can reach out to.

The one off the top of my head that I can think of is the TAP program, and also connecting with us at Northwestern, and seeing what we have going on too. We love to help. We have a new smart study that is also starting as well, that is dealing with social communication, and how caregivers can learn social communication strategies and behavioral regulation strategies as well. Yes, those are a couple of the programs that I would probably recommend.

[0:51:05] MD: Okay. Yes. One of my very dear friends who's actually an early interventionist, and I love her. She was Bear's early interventionist. She advocated for him to get in with the systems, because I couldn't be Ð I mean, I'm a PEDs EI SLP, but I couldn't be Bear's PEDs EI SLP. Her father was diagnosed with primary progressive aphasia and is not speaking, but he wanders. They set up a new program, and it's new in Orangeburg, South Carolina. It's where caregivers can call in. It's called the bonnet safety something or another. Bloody hell. I forgot, but it will come to me, probably at two o'clock in the morning when all the dots do. But, it an organization where families can call in and provide information on their loved one that has a disability or has a difference that would make them susceptible to not being able to answer their name being called by police, or just being prone to wandering. I think that this is why it's 2023, and we don't have a national network for this is kind of like what's going on.

But if it takes individual districts to start the steps before we have a cohesive state program, then let's add this to the list of things for 2024. Because 2023 is a little busy, so we'll just work on that in 2024.

[0:52:36] LB: Yes. Yes. That's excellent. That's been beautiful.

[0:52:41] MD: Right? Take a hurt, make it better, like big time. Okay. Tell me, what do you mean, qualitative research? Tell me about your qualitative research? Also, wait. Guys, I learned something. Qualitative is like the questioning, and quantitative is looking at numbers, right? Did I remember this from another lecture?

[0:52:59] LB: Yes, yes. That's pretty good. Yes, that's basically Ð yes. Qualitative, yes. The quantitative is like, again, those numbers, this stat, which we see a lot. They report those prevalence rates, and they say, "Oh, autism, especially, the recent prevalence is that, autism has increased in Black-Hispanic, in Asian children, and has exceeded the White children being diagnosed." That is the quantitative part. But then you look a little closer, and you're like, "Okay. But it's at the age eight." Okay. What is that? That means that, all right, they're not showing anything about early intervention. Okay. Why? Because Blacks and Hispanics are more likely to be misdiagnosed and have late diagnosis.

From there, okay, why I have the prevalence rates increase? Then you would come in with a qualitative question like, what is going on here. So try to understand, again, a descriptive of what's really going on, to not just have the numbers there. Understanding these perspectives, understanding what's happening, and seeing that like, "Oh, yes." There's increase in prevalence, but also Black children are more likely to be diagnosed as having an intellectual disability. Okay. Let's ask the parents or the caregivers that are involved in these situations.

By qualitative, I am looking at the actual perspectives of the Black caregivers during this developmental appointment, when they're going to get this assessment done. What the parents are actually reporting, not how many times that they're reporting a certain thing necessarily, but like, what are they saying, and why do they think that this is happening?

To add to like, "Okay. Maybe this is Ð help us in creating more culturally responsive assessments or helping with intervention to understand, to dig a little bit deeper. I see qualitative work, it can stand alone, and be very important on its own. My studies, it's not what we call a mixed method, where it's qualitative and quantitative. It's more qualitative, where I'm really trying to understand what parents are saying. But then, we can also use this in conjunction with some of those quantitative numbers to kind of support why we need change or why there are differences, or why there are things may be a little bit different than what the numbers are showing. They say that numbers don't lie, but they do. They can lie, because you might not be able to see the bigger picture. For me, understanding that qualitative descriptive part gives a bigger, better understanding of the bigger picture.

[0:55:26] MD: Can you share some of your findings? What are you finding? What are they reporting?

[0:55:31] LB: See. Now, I'm not going to have anything to say on Research Day.

[0:55:35] MD: Think of this as like practice for the defense.

[0:55:40] LB: Yes. I kind of alluded to before, a lot of parents are definitely reporting that they want their child verbal communication. They are worried about their child's verbal communication. They may say, "You started talking, and then he stopped" or He just won't talk" or "She just won't talk." But they're also talking about the memory, like, "Oh, he's got a good memory. He remembers real good" or "They're great at problem-solving," things like that. Those are a few of the things that have been reported. 

[0:56:11] MD: What about their feelings? Does it go into Ð so I'm pulling my PFD hat. Within the pediatric feeding disorder diagnosis, there are four domains. There are medical, feeding, skill, nutrition, and the fourth one is psychosocial. But that psychosocial piece is not unique just to the child, the patient. It also encompasses the caregiver, and their psychosocial piece, which has me always wondering, what's the psychosocial piece going on for the caregiver for all these other etiologies that we encounter? 

[0:56:46] LB: Absolutely. That's where Ð that second part. My first question is really, what are they reporting? Then my second question are like, what factors and experiences are these Black caregivers attributing to their child's characteristics? Why do they feel that their child is having these characteristics? It's been really interesting. One of the things is that, ethnicity. They will say, "My family's from Nigeria, so that's just a cultural thing. That's just how it is." Or they may have some self-blame. They may feel Ð there was one parent in the study, and she said, "They said it was my fault." Then the clinician said, "Well, who's they?" She said, "The therapist." If the therapist is blaming the parent, how are they in turn Ð when they're going into the Ð when the therapist, their EI therapist has already blamed them for their child's differences. When they go into this assessment, how are they going to already feel? They already feel defeated. They may already feel defeated. So, thinking about those things/

Then the other thing is, this study was actually done pre-COVID, but it was interesting to hear how many parents attributed to this limited exposure. This can kind of also tie in with the Ð they say, "We keep everything from them. We keep everything from her, and so we can't Ð that's why she's not able to do so" or "That's why she acts in a certain way, because we keep everything from her. We don't allow her to go out so much. She doesn't really have opportunities." It's like, okay. That's interesting. What's that about? I think that few of those examples Ð

It's one thing, at least for our field that's good is that several of the parents also attributed a lot of their behaviors to therapy and the benefits of therapy. This is an early intervention. The study is based on early intervention-aged children. We are seeing that the parents are acknowledging that, yes, early intervention has really been beneficial for my child that is possibly autistic. Then, the other factor is that a lot of parents, they know other differences as well. They'll say ADHD, or they may mention apraxia, anxiety, things like that they'll attribute. It's very interesting to hear.

But again, that may also be because of marketing or what has been marketed as well. When we think about what we're told autism looks like, how Ð the pictures of we see of autistic children, we see usually White little boys. There's a study done by Kaiser Ñ

[0:59:12] MD: [Inaudible 0:59:12]

[0:59:14] LB: Exactly, while playing the train in the court, playing with the blocks in the corner. There was a study done by Kaiser, and one of the parents was about Black caregiver perspectives as well, after their child has been diagnosed. They said, "Oh. Well, I thought that autism was for quirky White boys. I didn't know." Was that too far? He can't say like, "Oh, well, yes, it's not a stretch." When you think about Sheldon Cooper, and The Good Doctor, and all these things that we have. I'm saying that there's so many other different types of disabilities have been raised, but autism sometimes is overlooked. Those are a few of the things that I'm seeing.

But again, that's why it's so important to do the qualitative descriptive work to see what they're reporting. What's so different about the study that I'm doing is that, oftentimes, we get what parents are reflecting on afterwards. They'll say, "Well, this is my experience afterwards," which is great as well. But I'm really looking, I'm analyzing exactly what was said during. Because sometimes, they may not even realize what they're attributing or what they're saying. So just trying to really understand those, have that insight coming from directly what is being said is I think really important.

[1:00:30] MD: It makes me think about the bigger picture of health literacy, and access. That is Ð

[1:00:41] LB: Yes, absolutely.

[1:00:42] MD: I mean, there's so much marketing, specifically towards White women to watch out for autism, signs of autism. But it's embedded in places and stages that would be more regularly frequented by White women that are upper-middle class. How do we bridge that? I don't know. I don't have the answer for this. I mean, I'm just asking the question, but it feels like there's got to be ways to, I don't know, reach out.

[1:01:22] LB: Yes. I think it's about making noise, like making noise, making it Ð like saying, we are here, they're here. If you are not Ð it's not just about the Black community, it is about the diversity of the communities. It is about the girls, it is about the girls from diverse communities that are here, and that are autistic, and it's fine. It's okay. This is not something that needs to be hidden, especially Ð I speak for Ð I reflect on some of the things that I've heard within the Black community, at least. A lot of that has to be hidden. It's like, no, we don't need to hide anymore. We need more self-advocates. We need more self-advocates as clinicians. We need more input from diverse perspectives.

I really, really think that that is going to help them. We can't Ð we have to recognize that there is something broken, and so we do need to fix it. Even though that we see these prevalence Ð like I said, you see these prevalence rates, there's still work to be done. There's a lot of work to be done. In the field that is 92% White, we have to do better, we need to do better. I charge all of us, myself included, to do the work at shouting from the rooftops that we need to have change in terms of recognizing the variations, and differences, and the beauty that is within those variations and differences.

[1:02:42] MD: I love you. I am so in awe of you. This Ð yes. Oh my God. Oh my God. This is utterly amazing. Okay. I need to make a couple mental notes and introduce you to some people.

[1:03:02] LB: Please, please do.

[1:03:03] MD: Yes. We will sidebar that, but thank you for your work. Please, please extend my heartfelt gratitude to everyone that's involved with this lab. This is phenomenal.

[1:03:17] LB: Thank you so much. Thank you.

[1:03:18] MD: And the fact that y'all have this research project going on that's going to change so many lives. Because the people that go through the training to then go out and expedite assessments are going to expedite care. Word of mouth will spread and this will Ð I don't want to say grow like wildfire when Chicago and Stanton are a little smoked out right now, but you know what I mean.

[1:03:44] LB: Absolutely.

[1:03:47] MD: But like, that's not cool, [inaudible 1:03:48]. I used to say laughter was infectious and now post-COVID I'm like, "Ooh, that's not good." Okay. One of my favorite things of the podcast at the end is to always ask if you got any love money, or if somebody's got some time, how and where can they tie, what can we do in your honor help me spread joy?

[1:04:17] LB: Please, please give your time or resources, whatever you have to the Early Intervention Research Group at Northwestern University. You can find us@ei.northwestern.edu and we're on Instagram @ei.northwestern. We would love to have you on. Please, please, please, we would love to have your support. If you're on the Tiky Toky, then you can also just follow me personally, @thespeechscientist as well. We greatly appreciate you.

[1:04:48] MD: Amazing, @ei.northwestern on Instagram. Are you on Instagram as well?

[1:04:55] LB: I'm not so much on Instagram. I'm focusing right now on TikTok because it's a lot easier for me to manage in my personal life. You can contact me, feel free to email me at lthompsonslp@gmail.com. I'd love to connect with you all.

[1:05:19] MD: You're so Tiky Toky. My dad's tried to convince me to get on with the family snap of the chat. I was like, "No, I know what happens on the family snap of the chat." My brothers who are obsessed with poo, and they aren't too old to know better, randomly send like a message and they're like, "Just wait. I broke the record." No, I have a good thing I need to Ð also, shout out to my all-time favorite Instagram account. It's called Round Boys. There might be a dot in there. Oh my God. It's spherical-shaped animals moving. Just spherical-shaped animals, but they like wobble and they wiggle, and it brings a whole lot of joy.

[1:06:03] LB: I might need that doing a PhD process. I can tell you that.

[1:06:08] MD: Do the Google for Round Boys on the Instagram? I don't know, maybe don't google round boys because terrible things can pop up there. But, the spherical animals, man. That's where it's at.

[1:06:19] LB: Noted.

[1:06:20] MD: Okay. Well, Lillian, thank you, thank you, thank you.

[1:06:24] LB: Thank you. Thank you for the work that you're doing. I look forward to talking with you soon.

[1:06:29] MD: Yes. Thank you.

[OUTRO]

[1:06:31] ANNOUNCER: Thank you for joining us for today's course. To complete the course, you must log into your account and complete the quiz and the survey. If you have indicated that you are part of the ASHA registry, and entered both your ASHA number and a complete mailing address in your account profile prior to course completion, we will submit earned CEUs to ASHA. Please allow one to two months from the completion date for your CEUs to reflect on your ASHA transcript. Please note that if this information is missing, we cannot submit to ASHA on your behalf. Thanks again for joining us. We hope to see you next time.

[1:07:11] MD: Feeding Matters guide system wide changes by uniting caregivers, professionals, and community partners under the Pediatric Feeding Disorder Alliance. What is this alliance? The alliance is an open access collaborative community focused on achieving strategic goals within three focus areas; education, advocacy, and research. Who is the alliance? It's you. The alliance is open to any person passionate about improving care for children with a pediatric feeding disorder. Today, 187 professionals, caregivers and partners have joined the alliance. You can join today by visiting the Feeding Matters website at www.feedingmatters.org. Click on PFD Alliance tab and sign up today. Change is possible when we work together.

That's a wrap folks. Once again, thank you for listening to First Bite: Fed, Fun and Functional. I'm your humble but yet sassy host, Michelle Dawson, the All-Things PEDs SLP. This podcast is part of a course offered for continuing education through SpeechTherapyPD.com. Please, check out the website if you'd like to learn more about CEU opportunities for this episode, as well as the ones that are archived. As always, remember, feed your mind, feed your soul, be kind and feed those babies.

[END]
FBP 262		Transcript

	©Ê2023 First Bite Podcast	1