EPISODE 270

[INTRODUCTION]

[0:00:14] MD: 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 PFDs SLP. I am a colleague in the trenches of home health, early intervention, right there with you. I run my own private practice, Heartwood Speech Therapy here in Cola Town, South Carolina. I guest lecture nationwide on best practices for early intervention for the medically complex children. First BiteÕs mission is short and sweet: to bring light, hope, knowledge, and joy to the pediatric clinician, parent, or advocate.

[0:01:01] EF: By way of a nerdy conversation, so there's plenty of laughter, too.

[0:01:05] MD: In this podcast, we cover everything from AAC to breastfeeding.

[0:01:10] EF: Ethics on how to run a private practice.

[0:01:12] MD: Pediatric dysphagia to clinical supervision.

[0:01:15] 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.

[0:01:25] MD: To break down the communication barriers, so that we can access the knowledge of their fields.

[0:01:30] EF: Or, as a close friend says, ÒTo build the bridge.Ó

[0:01:34] 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.

[0:01:45] 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.

[0:02:06] MD: Sit back, relax, and watch out for all hearts growth and enjoy this geeky gig brought to you by SpeechTherapyPD.com.

[DISCLOSURE]

[0:02:20] MD: Hey, this is Michelle Dawson, and I need to update my disclosure statements. My non-financial disclosures. I actively volunteer with Feeding Matters, National Foundation of Swallowing Disorders, NFOSD, Dysphagia 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 SIG13, SCSHA, the Speech-Language-Hearing Association of Virginia, SHAV, a member of the National Black Speech Language Hearing Association in NBASLH, 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.

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 Dysphagia, 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, and 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 compensation for the CEUs associated with it from SpeechTherapyPD.com. Those are my current disclosure statements. Thanks, guys.

[0:04:18] EF: Hi, this is Erin Forward, and these are my disclosure statements. I receive a salary from Cincinnati Children's Hospital Medical Center. I receive royalties from SpeechTherapyPD for my work with First Bite Podcast and other presentations. I also receive payment for sales from the First Bite boutique, which I have with Michelle Dawson.

For non-financial disclosures, I am a member of ASHA and a member of Special Interest Group 13. I also am a volunteer for Feeding Matters. I am a contributor for the book, Chasing the Swallow with Michelle Dawson, which I receive no financial gain. I also am a member of the South Carolina Coalition Committee with ICLDIF for a time.

[0:04:58] EF: The views and opinions expressed in today's podcast do not reflect the organizations associated with the speakers and are their views and opinions solely.

[INTERVIEW]

[0:05:07] MD: All right, y'all. Now I'm blushing, because this is like, I am feeling my heart is full right now, and I'm in awe of today's guest, because we have none other than Emily Starling with the Neurotwist Podcast. Today's episode was facilitated in a passion project of Erin's, making sure that we are elevating colleagues' voices that are brave enough to stand on the edge of the abyss and move our career forward in the most heartfelt, meaningful way. That's a very large calling, and Emily's doing it with grace and kindness and a fair bit of sass, which is freaking awesome. Emily, thank you so much for coming on, Erin. Thank you so much for facilitating this conversation. Hi.

[0:06:04] EF: Emily found Ð she reached out to me and I was on her podcast and I've since listened to a lot of her episodes and they're wonderful. I was very Ð Michelle and I really work to provide a safe space where people can be vulnerable. I was really grateful for Emily's vulnerability, even when I was on her podcast and talking about things that she's been through. We had another phone conversation just about what did we want to talk about today. I feel like, she's making waves just by having the conversations that she's having on her podcast and by saying, I want Ð representation is really important and who we're asking questions is really important, and by creating a space to both share your experience as a student and a clinician and also, hear from other people and elevate their voices, I think, is what we try to do here. We all have our own perspective, so we wanted to bring you on to hear yours.

[0:07:12] ES: Thank you so much for having me on. I can definitely say that y'all were a big part of what inspired me to start this whole project almost a year ago. I guess, if you count all the pre-posting stuff that it was definitely over a year ago, but you know how it goes.

[0:07:35] MD: That counts.

[0:07:37] ES: Yeah. Thank you for being a part of my formative journey, I guess, both as a podcaster, media maker, and a clinician for sure. Well, my name is Emily. I'm a speech pathologist in the Houston, Texas area; born and raised. I finished my graduate school education at the University of Houston in spring of 2021. I think they say, early career professional, but I prefer baby SLP, because I definitely Ð almost going into my fourth year of practice, I feel like, I have gone from newborn to four-years-old, you know what I mean? It's been such a whirlwind. Yeah, huge whirlwind.

As much as I feel so much gratitude that I have so much to learn, I'm also give myself a pat on the back that I feel like I've come really far as a clinician in such a short time. All that being said, I was in Ð I was finishing up my first year of my CF when I basically was told by my therapist like, ÒOh, you didn't know that you were autistic?Ó I was like, ÒNo, I didn't.Ó That's how that came about. I'm trying to remember how old I would have been. I would have been either 23 or 24. Late diagnosed. I try to be as open about that as I possibly can, because my experience as an autistic person is one singular experience.

I guess, I do want to say that very much right off the bat that I do not speak for all autistic people. I almost hardly speak for myself as an autistic person, because I'm still learning so much about myself. Definitely one singular person. That really, of course, kick-started a lot of stuff for me clinically, but of course with the podcast as well, definitely helped for that to become a big passionate part of my career. I work in ECI also, and I've worked in Ð

[0:09:59] MD: What is that?

[0:10:00] ES: Early childhood intervention. Sorry.

[0:10:02] MD: Oh. Each state calls it something different. 

[0:10:06] ES: Oh, yes. I know. I know. That's how I started listening to y'all, because I pretty much searched up early intervention speech therapy podcasts. You all the first one to pop up. I definitely told you this when we met at ASHA that I basically looked at you, Michelle, as my CF supervisor, because my actual one, hopefully, she doesn't hear this, left much to be desired. We'll put it that.

[0:10:32] MD: Thank you very much. We could support from a distance that Ð

[0:10:36] ES: You definitely did. You definitely did. When I first started early intervention, I remember going in and being not really sure what early intervention was to a large extent, but also, I remember actively thinking, I'm pretty much open to anything, but I'm not super interested in autism, so I could take or leave it. It wasn't going in being like, I hope that I have an all-autistic caseload. Then even when I started seeing kids, I reflect back on it now realizing that I had so many kids who probably by now have received a diagnosis and just wasn't aware.

I was not really prepared for that in graduate school, largely because of the way that graduate school, or on the whole, each program is a little bit different, but the way that it was framed to me was not the way that it is. Even with kids that I could look out and say, ÒOkay, they probably are,Ó I had so much fear about bringing it up, built-in, because of how it was discussed. I didn't have any conversations about autism with families at the beginning of my career. Yeah.

[0:12:07] MD: That is something that we have to make the shift in the world of academia and make the shift in our clinical supervision, such that we are creating a safe space for the students to engage in that counseling component, as well as how to navigate these conversations. Not just teaching counseling, but also, what tools and strategies do you need to have as an adult learner to, as Erin always says, to read the room, so that a way we know how to support caregivers wherever they are on the journey of discovery for their child, whether it be autism, or good Lord almighty, as many tiny humans as I've worked with over the years that there's been an infarct that was missed. But how do we say, I really think that we need an MRI of head, neck and spine? But equipping students.

Then I have 400 questions on, how do we meet our neurodiverse students? How do we equip them so that they feel successful? Neurodiversity covers so much. I mean, I am one person with ADHD and I know my experiences and having to navigate the conversations that executive functioning differences doesn't necessarily mean executive functioning disorder. But I'll be quiet, because I want to hear your thoughts on that.

[0:13:39] EF: Well, do want to hear the rest of how you got to starting the podcast and if Ð

[0:13:45] MD: Yes. Oh, sorry. I jumped the gun.

[0:13:46] EF: Well, Michelle, I also do want to highlight what you said about being one person, one experience. I think people really struggle with that, because we were taught to put things in boxes. What I always highlight to people is if you've met one autistic individual, they have had to navigate the world with their own differences and take the time to figure out how to advocate for themselves. Why do we not feel it is our job to learn about them as an individual, instead of putting them in a box? I've had conversations and you and I have talked and I'm getting a little tired of trying to accommodate everyone's feelings, when the more I learn about the neurodivergent kids that I work with, it's like, why are we not standing up more for their needs and focusing more on upsetting clinicians that may have to go through a grieving process of how they were treating? I understand that, but that's been a little bit of my Ð and we've talked about that. But I didn't want to cut off your story. Wherever you want to go with that, just, you know.

[0:15:00] ES: Well, I think that it's ironic. You'll see autistic people, autistic clinicians talk about the irony of us being the ones who are considered inflexible, and yet, exactly what you described is what happens. I also get a little bit Ð it's mostly sad, I think, when I encounter clinicians who are just very staunchly opposed to making any kind of shift in their thinking, even if it's not about neurodiversity. Even if it's about non-speech oral motor exercises or just Ð

[0:15:45] EF: DonÕtÕ get Michelle started with that one.

[0:15:48] ES: Just things that we have long established are like, okay, come on, get now your practice. Even those things, it's like, I don't know what people's reasons are for getting into this field, but I fear that people get into the field, because maybe it's like, they had the financial support to get through graduate school. It seems like, there's always jobs available, so it's fairly easy to get into, and then we sit with that.

Once you get past the financial barrier, there's job availability. I don't know. I don't want to make any judgment calls about the easiness or hardness of people's jobs because I would never work in a school. I would never want to work for a big private company that's just a therapy mill. Those things are challenging in their own ways. But I also have this, just gripping fear in my soul of becoming a clinician that just gets in, does the day, and leaves, and is like, ÒWell, this is how I treated the last thousand kids that I've worked with, so this is how I'm going to treat this kid, no matter what I hear.Ó Luckily, well, it's not totally true. I'm in a few Facebook groups, and I don't like Ð I shouldn't engage in Facebook discussions as much as I do for the sake of my own professional career.

[0:17:20] EF: Michelle cut herself off, so yeah. Michelle?

[0:17:22] MD: I cut out all of them, because it made me so angry. The boys were like, ÒMom, you're murder mad.Ó I'm like, ÒI know. Mom's murder mad.Ó That's not a safe place to live. I took myself out of all of them, and honestly, blocked a fair few as well for mental health purposes. If you're listening, folks, it's okay to do that. Here's your permission. You can do that.

[0:17:46] ES: I feel like, I need to take that advice, because some of the ones, even ones I'm not in, I have gotten posts that have come around to me of clinicians fighting for their life to use the term nonverbal, fighting for their life to use the term low functioning. The argument is literally, well, they are nonverbal, well, they are low functioning, so what else am I supposed to say? Then you have all of these disabled, neurodivergent, and allied clinicians taking so much emotional energy to explain this. I mean, I have written novels to explain things, or to give my perspective on things that are just met with a brick wall.

[0:18:35] EF: You know what's funny? The irony again, that clinicians will sit there and spend hours working with an autistic individual telling them what they can say in a conversation, and that they can't walk up to someone and tell them they look ugly today. We spend so much time telling people what they can and cannot say, but yet, how we describe someone, again, it's really interesting how there is so much irony in, I think, how we treat and then what we expect from the people that we treat.

[0:19:04] ES: Yeah, it is ironic. Yeah.

[0:19:07] MD: I have a wonder. We have the ASHA Big 9, and teaching social language is one of the Big 9s. I wonder how that instruction and those standards are going to shift in the next five to 10 years, as one, will it stay part of the Big 9, or two, will there be a systematic review, such that it becomes more affirming, as opposed to focusing on what we cannot do? Does that make sense?

[0:19:45] ES: I am also interested to see how that goes, just in general. I have had the conversation, or seen the conversation with a lot of people who will say Ð IÕm summarizing, but I would say, it is not too inaccurate summary. Well, if we are going to be affirming to all these differences, and aren't we going to affirm ourselves out of a job? If everything is just acceptable, then why are we even therapists? Okay, I thought I was neurotypical for 20-plus years, and I still went to therapy, because I had stuff going on. You don't just give someone therapy because they are X, Y, and Z.

You look at the person, or you're supposed to, you're supposed to look at the person and say, what are their areas of need? What do they want support with? Then, go from there. It was drilled into my head in graduate school that you don't look at the person as a standardized test score. You don't make goals based off of test questions. Then I come into my career, and what do I see? Oh, they got the test question wrong for stacking up six blocks. We're going to write a goal for them to stack up six blocks. Then get down and they want to play pretend that they're Godzilla and stomp all over their blocks before they get to six, and they failed. Who cares? Who cares? I don't care. I don't think I can stack up a tower six blocks. I'm not that talented. I'm not that good at hand-eye coordination. That being said, you don't affirm yourself out of a job when you're a clinician.

[0:21:38] MD: I did have a very personal moment of cultural growth a couple of weeks ago. Where I live now, there's a very large Mennonite population, and I'm not familiar with this faith, with the culture, because that's just Ð I didn't grow up around, right? Myself and the students, have been going and doing child find and community-based screens with one of the local schools, and one of the caregivers was sharing with me the approach to, like part of that philosophy of the Mennonite faith, is that each child will come into their own in their own time. Often, they don't start speech therapy or therapy early. They wait until later.

I mean, high school, or college, because that's when they as an individual want to work on X, Y, or Z. I found that just to be so beautiful because it's truly a choice. Just like you were saying, you made the choice to go to therapy, and we have to respect the autonomy of that. I don't know. It was just a beautiful awakening on something that I didn't even know existed in a viewpoint, and that made my heart happy.

[0:22:57] ES: Yeah. I think that that idea exists in a lot of different ways. I mean, I think there's the side of it where self-determination and waiting until the point that we can self-determine. Then the side where my cousin didn't talk till he was six, and he was fine, you know? I definitely see both of those. I mean, I work with a lot of different communities here in Houston, not specifically Mennonite, though, and that sounds really interesting because I don't know if I've ever encountered a culture Ð

Right now, I work with a very large Orthodox Jewish population, which is maybe the most similar that I can correlate that to in my mind, in terms of a religious culture. I am so honored that I get to have relationships with all these different people. It's the biggest like Ð it warms my heart the most. Anyway, I just like that story that you just told.

[0:24:06] MD: I have a notion, and I'm putting this in the universe, that we could create an SLPs, a faith caucus, where members from all different faith backgrounds could join, and we could create this beautiful calendar of all of the holy days for all of us.

[0:24:26] ES: Oh, thatÕs awesome.

[0:24:27] MD: But then, talk about, okay, these are the customs, the foods, the moments, traditions built within these holy days, so that as a Ð I mean, I am a monolingual clinician from an upper middle-class white family. I am the stock SLP, right? If I want to know better and do better, how amazing would it be to have those tools to say, ÒOkay, so how can I honor this, and how can we work on this in therapy?Ó Because there is a time and a place when we have patients that want to learn Ð I've had caregivers say, ÒWe want to be able to say the blessing before a meal, because we do feeding therapy.Ó Okay, well, then I will honor your blessing and sit there. It may not be the prayer I pray, but this is important to you. One day. One day we'll add a bucket list of things to build.

[0:25:25] ES: I love that. Coming into my career, I was still carrying a lot of the negative perceptions. I have a large family history of ADHD. All throughout graduate school, undergrad, pretty much since I left high school, I was working, and going to school. That sounds like a lot, and it was a lot, actually. I'm not going to undersell it. It was a lot. I have points where I was working two, or three jobs at once while I was in school. In graduate school, I did not quit my last job until the very last semester of graduate school, and they did not like that at my program. Anyway, that's a whole other thing. 

Anyway, it was a lot to juggle. Then going into working full time, it almost felt harder in some ways, because my time was not as structured out for me. You have your class, and then I have my shift, and then I might have another class. All my time is broken down for me. I got very into time block to-do lists when I would have free time. Then when you get to a job, where you're working full-time, and especially in early intervention, where you're not being watched like a hawk every single minute that you're on the clock, like you're not in an office necessarily, so you're doing your own thing.

I started to feel I wasn't doing very well, I guess, or not organizing my time very well, especially when I was still building up my caseload and had a little bit more loosey-goosey time. Anyway, I decided to go to therapy again and try to figure out if I had ADHD. The therapist that I ended up with, I think it was just really, just really good luck, because she was really my third choice, I think. I am so happy that I ended up going with her. I scheduled with her, scheduled an evaluation for ADHD. Then by the time I got to that evaluation several months later, I was like, all right, this is where they're going to confirm or deny that I'm autistic, because that's where the conversation had shifted by that point. I think it always took her two or three sessions to bring it up to me, which felt like a lot at the time.

My reason for saying all of this is because even going into that and hearing from my therapist that I'm likely autistic, I was truly devastated to hear that because I was still carrying so much of the negative perceptions of autism. I was surrounded by therapy styles and therapy manuals. They're like, what do you call those? Therapy programs, that reinforced that we need to fix autistic kids. She told me this and I just started crying, because I thought just my life was over. I thought that if my work found out that they would have to fire me. I thought that my boyfriend would break up with me as soon as he found out.

I was like, ÒOkay, cool. I can be autistic, but nobody can ever find out about this,Ó because it was worst case scenario for me. I've settled with that experience. In the acute time after that, I felt so guilty about feeling that way. Now, I'm like, what other way was I supposed to feel? Because A, that's the way that autism was described to me. B, I didn't have a model for what an autistic clinician looked like. I wasn't aware that it could be a thing. Everything that I learned about autism said that being autistic is incompatible with being a clinician. I think that's just another problem is that we think that in order to be clinicians, we have to be completely neurotypical, we have to be completely able-bodied, like absolutely nothing else going on. That's not true, of course.

Luckily, shortly after that, I did find Rachel Dorsey, who was a wonderful autistic SLP that was also very inspiring for me to step into what I'm doing now. I also found a group of other neurodivergent clinicians online. IÕm definitely realizing that there's a lot more of us out there than I thought, especially, and again, IÕll own up to it right now, there is a bias towards late-identified clinicians in the sense that there's going to be more clinicians that were late identified than there were who grew up knowing that they were autistic. That is one downfall of, I don't know if I called it a downfall. It's a consideration when you think about, or when you talk to autistic clinicians is that Ð I'll speak for myself here.

I don't have the experience of growing up in therapy related to being autistic. I did go to therapy as a young person, but never speech therapy, never ABA, never anything related to being autistic, just what I thought was mental health. My perspective on that is limited. But also, every autistic person's perspective is going to be limited to what they've experienced. I think that there is an inherent trauma that comes with growing up autistic, whether or not you're identified, because it's not just that the world is not built for autistic people. Sometimes it almost feels like, the world is deliberately built to assault the senses and the sensibilities and the preferences of autistic people.

Because I walk around sometimes and I'm like, what in God's name motivated the creation of whatever this is? How did we end up with this? Because it's so far beyond the pale for me to think that anybody would enjoy that thing that I cannot compute. It's not even a thing where I can say like, ÒOh. Well, I get it. They weren't thinking about autistic people.Ó It's like, who were they thinking about when we decided that this would exist? Anyway.

[0:32:48] EF: I will say thank you for sharing, because you don't have to. I think it's this balance of listening to autistic voices, but also not forcing them to share a story if they don't want to share it. It's not anyone's responsibility. I think, also, you continuing to make a point about being one experience. We are also all one clinician that has one experience as being a clinician. To think that we're supposed to be all-knowing for how to treat every child is ignorant.

My brother is not diagnosed autistic. He was diagnosed with ADHD, but we've had a lot of conversations as a family and with him. My sister even asked him one day, she's like, ÒGrace, do you think ÐÓ Him and her are very close. ÒDo you think he might be autistic?Ó He's like, ÒI've thought about it.Ó I don't want to speak on any of his experience, or how he identifies. But we've had some of those conversations. With his diagnosis of ADHD, I think my family did a really great job of supporting him and his differences.

I think it was in 20 Ð it may have been 2019 as well. I could be wrong. Maybe it was 2021. I get them very Ð it was before COVID. I remember, I was reading an article and I always knew I had anxiety and I wasn't really Ð it was just something. I was reading an article and I was like, ÒHuh, I feel like I have OCD.Ó I was like, I feel like, it, just the way they describe the ruminating. I knew as a child, I did. When my parents split up and got divorced, I had a lot of routines I had to do. I had to touch things a certain number of times. I had to have my dad say I love you a certain number of times. I don't really talk about that part of it, because I still have, I think, some shame around it, because it made it really hard.

I just have learned through, I think, so, and I know I had big feelings as a kid, too. I just hid them a lot, because I wanted to make everyone else feel comfortable. I feel so lucky to be able to build relationships with the families and the kids that allow me into their world. I find the children I work with, their brains are so beautiful. They allow me to see the world in a way that I would never be able to. I just get so frustrated with clinicians that don't see it as an honor. Our job is just to help each other understand ourselves.

When we were talking about the, how do we phrase this and how do we describe people? Being able to label how I have been feeling gave me so much, there's a process in it, but then eventually, it gave me so much peace in knowing. I talk so much about how even kids I work with, them being able to feel understood that they feel angry, or feel understood that they feel frustrated, and that word does carry so much weight.

The language we use and how we talk about the children we work with, that can completely change a parent-child relationship. That's building attachment. The way you talk about a child, and be very careful, and I think people need to be very cautious about what they say in front of a child. If you're going to be talking about a child, whether or not you think they understand what you're saying, they understand your tone, they understand they're not a part of the conversation, and it impacts the way that they interact with you and their caregivers. Be very conscious. I have families where I will say, ÒI'll call you afterwards,Ó because that's not fair. Or I will say, ÒHey, this is what we're talking about. I want you to feel like you're a part of the conversation,Ó whether they can express that or not.

I do feel like, I think that conversation about how we bring it up. I always try to emphasize to caregivers just the strengths I see in their children and really focus on that. I was reading an article in Positive Psychology. They use this technique about picking the five things about yourself that are your biggest strengths, and then using those biggest strengths in the things that are most challenging to you. What we do in therapy is we don't let them use their strengths with their challenges. I can imagine that.

[0:37:30] ES: Yeah. I think I made a post about this the other day about the idea of, if you have a goal that is do this thing, but not with your accommodations, so uncool. Literally, most uncool thing that I can imagine to withhold an accommodation from someone like, what, for fun? Do you think that they're not going to have it someday? Yeah, they're not going to have it if you don't let them have it.

[0:37:59] EF: Will you take away someone's glasses, if they canÕt Ð

[0:38:01] ES: I know. A lot of times we're talking about IEPs here. You can put anything in an IEP. Why would you do that? You can pry my noise-canceling headphones, complete that thought. Yeah, I think that also, clinicians, because they have these ideas about autism, they make a lot of assumptions about the thoughts that caregivers have about autism.

[0:38:33] MD: Good point.

[0:38:33] ES: I was literally sitting in a session with a family who, I was just seeing them for the second time. Their child's about to turn three the first week of March. This is a very short relationship that we're having. The service coordinator was there. She was getting a service coordination, her thing done. She, the child had failed the autism screening. She had to Ð

[0:39:07] MD: [Inaudible].

[0:39:10] ES: I know. She had to bring it up in the service coordination meeting. This is how she brought it up. ÒOkay, so according to the screening, your child has failed the autism screening, and we are recommending an evaluation for autism. When you go to the school, they're probably going to do the same thing. Now, I don't want you to freak out when they bring up autism at the school. They might say that he's autistic at school. But then, if you go outside of school, they might not find the same thing. He does make good eye contact. He does like to come over here and talk to us. Just don't panic.Ó It's whatever.

She kept using the words like, freak out in it. This dad was sitting here just listening. Absolutely, no signs of freaking out in his face. I mean, and here's the thing. I get it, okay? I get being nervous to bring up autism to families. I have had not great experiences bringing that up to families. It's not fair for me to assume that they've had this horrible, traumatizing experience with autism that's going to make them freak out. What does that serve?
Then, even if they do freak out, okay, I am the gatekeeper of a lot of things as a therapist. I can have the privilege of being the first person that actually talks about autism with this family. They might have Googled it. They might have seen their nephew, or whatever. Actually talking to them about it, actually telling them about what it is, I oftentimes am the first person to actually have an extended conversation with them about it.

What I do in that moment can make or break so many things for not just a child, but for that parent and child relationship. I think what you're saying about being welcomed into that family dynamic and helping to form that attachment, if we tell a parent that their child is something to freak out about, that's not going to be very good for their relationship. Usually, when I bring up autism to families, I will just ask them, ÒWhat do you know about autism? Have you heard about autism?Ó Because we just make so many assumptions, and that's so stinky. That's bad. I hate it.

[0:41:55] EF: I think that's a good point, though. I think we do that in so many other ways, but it's like, what is your perception? How do you feel about blonde hair? Your child has blonde hair. Do you have any Ð maybe don't, you know. Chlorine might not be great for them. Don't put them in the pool for a very long time. What if we talked a little bit more about autism, like there it is?

[0:42:20] ES: Yeah, just instead of assuming that they already have had these built-in negative opinions about it. Because honestly, as I have had challenging conversations with parents, but I've also had much more laid back, neutral. That's what I always go for is neutral. I don't think it's helpful to go for overly positive either, because we're in the real world. We all have challenges. I have challenges that are different because I'm autistic. My clients have challenges that I will never be able to understand because I was GLP hyper-verbal as a child. I was not in the same position that my kids are at all. It's not fair to the parent or to the child to make those assumptions. Then we can talk about the whole idea of presuming competence, too. We make assumptions about what we think kids can and can't do all the time.

[0:43:21] EF: I'm curious in the time period that you were diagnosed and then going through your experience as a CF. I know when I work with a child and I see signs of OCD, I have a harder time because I feel it in my soul. The mental torture that is having to do something multiple times knowing that like, why am I doing this? I can't imagine and we have to be informed as instructors, supervisors of the trauma that can be inflicted on a clinician that is autistic working with, especially that diagnostic process you're talking about.

[0:44:04] MD: Yes.

[0:44:05] ES: I'm going to tell you all a little story about something that happened right when I was going through my evaluation process that made me realize I needed to leave my last job. I'm going to preface this by saying that Ð because if my boss hears this, she's going to know that it's me, or my former boss. She was the best boss I've ever had. It had nothing to do with her. That's just important for me to say, is that there were a lot of positives about that job, but this one experience was actually traumatizing for me. We use a program in that ECI program. I don't know if they have it where y'all are. It's starting to spread. It's a program Ð

[0:44:58] MD: IÕm familiar, but I canÕt like, yeah.

[0:45:00] ES: ItÕs a program that was made by an SLP, who is dual-certified, SLP, BCBA. Basically, it's a way that they're trying to bring ABA down into birth to three, because they do have it, but they're just trying to make it more common, I guess, because if you don't have an autism diagnosis, it's a little bit harder to get those things. I think that they're just wanting to put it in our publicly funded ECI programs so that they can get the ABA experience but in ECI.

It's pretty much everything that you would expect from an ABA early childhood program. It's very focused on Ð eye contact is a big thing in it. Oh, my God. It's like the foundation for everything in that program. Anyway, what happened one time was, and this was right before Ð probably the week before my actual evaluation, we had the creator of the program come to one of our meetings to give a talk about the program, because they were trying to get more people at my job trained. 

She had this whole presentation about it. Of course, she had all the fearmongery statistics, like it's increasing in prevalence and blah, blah, blah. She said some stuff during that talk that just made me realize like, oh, wow, the way that clinicians look at these kids with high needs is really messed up. 

[0:46:55] MD: Yeah.

[0:46:55] ES: She said stuff like, ÒIt's great to work on things like eye contact when they're little, because when they're older, they tell us things like, ÔOh, I don't like it. It makes us uncomfortable.Õ But when they're little, they can't tell you that, so you can just work on it.Ó

[0:47:19] MD: That's horrible.

[0:47:20] ES: Then, this was my other favorite thing that she kept saying was, oh, my God. I still can't believe that she kept saying it. She said it so many times during her presentation. She said, ÒAutism creates more autism. If we allow these kids to ÐÓ That was the tagline. Autism creates more autism. She kept saying like, ÒIf we allow these kids to do things like autistic behaviors, they're going to be more severe as they get older. If we help them put a stop to it when they're in early childhood, then their outcomes are going to be better.Ó 

[0:47:57] MD: This is ableism.

[0:47:59] ES: Yeah, it's a wonderful example of ableism. It's a wonderful example of violating a child's bodily autonomy. I'm about to put up an episode today that I did with an SLP out of California who does a lot of AAC. I was editing it yesterday, so it's fresh on my mind. We were talking about AAC, and she brought up a quote from Ð now I'm going to forget what the article was. Basically, the idea that of prerequisites for AAC and thinking like they need to show us that they have the ability to use AAC before they can use it, which is obviously not true. The article was saying, we're telling this person that they need to be able to prove to us that they can do something, without giving them the tool that they need to do Ð that they need in order to prove that they can do it.

I don't know why that's so heavy on my mind right now, but probably because most of the kids I work with are non-speaking and are Ð I can't say what their future of communication is going to look like. It's just so common that we put these standards on kids and then don't give them the tools to do it. We do these things with kids like, we'll write directions, or we'll write following directions goals for kids. Then the way that we target it is just tell them the direction over and over again and hope that they get it at some point. What is that doing? How is that considered therapy?

We meet a kid and we might say Ð so this is what I'm going to say. I've seen so many therapists say things to families, ÒIf I find out that your child is autistic, it's not going to change the way that I treat them.Ó I have a way of saying that and then there's a way that I think that other people say it. If we say that's not going to change the way that I treat them, then we probably mean we approach every child looking to get to know them, trying to figure out what their sensory profile is, trying to figure out what kind of support they need. Yeah, it's not going to change the way that I treat them because I look at every child as an individual from a relationship-based approach, from a trauma-informed approach, culturally sensitive, all these things.

Most of the time, if I see another clinician saying, "Autism is not going to change the way that I treat this child,Ó it's because they are going to expect that child to adhere to all the neurotypical norms that they have in their mind. Yeah, I have one kid over here who loves to sit at the table for our entire session and do table activities. Every kid needs to be able to do that, because that's the only way that I feel comfortable doing therapy as a clinician. Yeah, it's not going to change the way I treat them, because we're going to go from hoping that they enjoy to sit at the table to put them in a Rifton Chair, or buckle them up in their high chair, or something like that, because that's how therapy looks.

[0:51:09] MD: This is a shift. It is very difficult as an older clinician. I say this, because I'm 40. I'm an older clinician at the stage of the game. I graduated grad school in Õ09. It's been a minute. It's very difficult to access and understand for some individuals the shift in changes of therapy, especially if we don't have Ð for those that don't engage with social media on a regular basis. A lot of this new knowledge is coming out through social media platforms.

It means that it puts the onus on the individual to come up with creative ways to absorb new knowledge. It is, because I was trained, you have the child sit at the table, the child has to make eye contact. These were things that we were taught. The research to practice, making that transition is huge, and it doesn't mean we have to be lifelong learners. Then, the other variable of not necessarily, some people view that change that they have to admit that they were wrong, or what they were doing was wrong. It was not malevolent. There was no malevolence in what we were taught to do. It was, we were as good as the information that we were given, but the information has changed.

[0:52:39] ES: Exactly. Exactly. I think that thatÕs so important is, I remember, actually, it was on y'all's podcast, Meg Proctor came on. That was my first introduction, actually, to neurodiversity as well, because it was before I got my diagnosis. She said something Ð also, I just realized I said her maiden name. I don't remember her married name. Sorry.

[0:53:06] MD: She did just get married. I saw that change. I will do the Google, so we will have it correct.

[0:53:11] ES: Okay. She said something like, learning about Ð Pharrell?

[0:53:19] MD: Yes.

[0:53:19] ES: Pharrell. She said something like, learning about neurodiversity and neurodiversity-affirming practices. I feel like, this is an accurate thing to say, that it takes us back to why a lot of us got into therapy in the first place, which was because we want to help people, because we have a compassionate heart and want to impact people's lives. That's why a lot of us got into this field. Neurodiversity can help us to reconnect to that, because I do think, even in my short time as a CF before I learned about neurodiversity, I definitely felt odd about some of the things that I was doing. Or, at the very least, I honestly just felt I didn't know what I was doing, because you have all of your tricks and tools for how to encourage language use for toddlers. Then you meet a toddler that has high support needs that's very sensory seeking and all those things that magic bag of tricks that you were taught don't really connect with them the same way that they might with other kids. Then you're left spinning your wheels.

Learning about neurodiversity-affirming practices helped me to not feel like I was spinning my wheels as much. It also helped me to release myself from the idea, and I want to be careful saying this, because I know that we have the productivity in our jobs. But it helped me to release myself from the idea that every single minute of my session had to be productive, if that makes sense. Sometimes I'll see kids at a daycare, or preschool, or something, and an ABA therapist will be there. Honestly, it also makes me sad for the ABA therapist, because every minute, there's something new that they have to get the kid to do. Every minute, they're coming up to the kid like, ÒHey, point to your head.Ó

Like, how is this helping if you're seeing him in class? Why are we even doing Ð They're not all pointing their head in class, like what relevance does this have? That's beyond even what I'm trying to say. What I'm trying to say is that we don't have to spend every second knowing this is the goal and the skill that I am trying to target with this thing that I am saying. We talk a lot about what the real world is like. We have to use therapy to help kids prepare for the real world. Then neurodiversity comes in and sometimes feels like it's ignoring what the real world is, which I don't think it is. I think that neurodiversity has to Ð I think it has two prongs to it, where we look at what we're doing in a session, but then we also look at what are we doing within our spheres of influence to help others learn and understand about neurodiversity.

Just because a child has a compliance-based environment outside of therapy doesn't mean that therapy also has to be compliance-based. Therapy, in my opinion, should be radically safe, radically accommodating. No matter what we're working on with a kid, or I'll say adult too. I mean, I just think kid, because that's what I work with. Whatever we're working on, it doesn't matter if we're working on an R sound. It doesn't matter if we're helping a child, or helping a teenager navigate their dating life, or something. That's where we're at with speech therapy.

Whatever it is, there is always a level of vulnerability. There's always a power dynamic of you are the person who is seeking therapy and I'm the person who's here to fix you. I think that's another thing in therapy that we need to release ourselves from. It's not just the idea that we're supposed to be fixing people. I don't even mean just from a neurodiversity perspective of we don't need to be fixed. It's also like, I think our education puts so much pressure on us to know about everything and have the right methods to fix everything, anything that we come across. 

Just like you all talk about all the time, we silo ourselves off, because we think we're supposed to have it all. Also, we put so much pressure on ourselves in these, just in individual sessions that we don't take the time to realize like, EI therapists, you're probably not going to get the toddler talking within the time that you see them. Maybe I'm a bad therapist, but that doesn't happen very often for me. It's a very small percentage of my caseload that comes in completely non-speaking and leaves my caseload with their age equivalents, or approaching it.

Stop thinking that that's what you need to do. Stop writing goals that say, well, they're not using any words, so let's write a 50-word goal. We are setting the child up for failure. Then another thing is you're probably not going to get them talking by the time they leave your service. Be open-minded to other ways of communicating, that they need AAC. They need a way or an opportunity to advocate for themselves. If you don't like the way that they're advocating for themselves by running away, or pushing, or doing whatever that you don't like, well, then you better think long and hard about what you can be doing to cross that bridge for them.

Because as EI therapists, also, the family and even the child do so much to literally open their doors for us, but to let us in and put us in a vulnerable spot. We have to pretty much spend that entire relationship Ð I really believe this. We have to spend that entire time completely meeting them halfway because they've already done pretty much everything that we should expect for them to do. If it's not working out for them, we have to figure something else out because all they can do is open their door to us and have us there. We're supposed to be doing everything else.

I know that coaching is Ð yes, we're supposed to equip them, but we are supposed to equip them. They're not supposed to come pre-equipped. We have a lot of work to do with families sometimes, so that's okay. Anyway, I know that got a little bit off the rails.

[1:00:57] EF: I think that goes back to thinking about things in regards to participation over product and the process. When people ask me, especially, I think a lot about feeding, they'll be like, ÒWhat's your protocol that you use?Ó My answer, first of all, is that I don't use any protocol. If I use something that people, like a foundation, it's more of a philosophy that has core principles to it. Floor time is more of a, here are these principles, here are our values. I don't even really think strategy is the right word. ItÕs like, wait, watch, wonder is a strategy, but it's really watching and observing as well.

My job is less about, I have less control over where they get. We have less control over Ð it's the tree metaphor I use. I don't know who this child is, or what type of tree they're going to be. What I do have control over is how I help them get there, and the process of which their therapy experience is and how they advocate for themselves in the world. We try to have so much control over where they get. That's really, we have to let go of that because that's not our job. Our job is, like you said Ð I want to go back to your point about preparing for the real world, because I think that's a conversation I have a lot with clinicians about, well, they're going to school. I have to make sure they're ready to go to school. I think about it, and I can compare it to defeating therapy.

Some kids eat on the counter with me. They feel safe, they're trying new things, they're literally on top of the counter. Guess what? They go to school and they know how to sit at the table. They just know this is a place that is safe and I can make it safe. Why are we making more places unsafe for them? The world is already hard enough. The world is hard enough for a lot of people, so if we can be Ð and I remember, I think it was Karyn Purvis, who does the trust-based relational intervention, or maybe it was Kim Barthel, probably both of them, that talk about how the most valuable thing for a child is to have one person that unconditionally loves them.

[1:02:59] ES: Yes.

[1:02:59] EF: I view that, and what we can do is create that safe space where they feel safe, and that's going to carry so much more than if we prepare them for the real world.

[1:03:09] ES: Yeah. I mean, I think that that is Ð we're preparing kids Ð especially for my situation. If I'm seeing a two-year-old, their real world that they're going to be going into soon is preschool. Preschool is literally called pre-school. You're not supposed to have a kid that's sitting perfectly in a desk for the entire day at preschool, because that's where they learn whatever they need to learn in order to be able to go into school. I think there's a lot of really great educators about preschool that I'm not going to speak over them, because they say it a lot better than I do.

In any case, we also can't know what accommodations or supports a person might need if we don't let them experience that thing. In the world of disability studies and advocacy, there's a concept. I'm pretty sure it's called the dignity to fail. Yeah. Dignity to fail, or dignity of risk, basically. It goes along with like, we can't know what accommodations a person might need until they experience it. We can't know. Yes, an autistic child is probably going to go into kindergarten and not have a good time right away. Let's just say. Because they're not used to sitting at a desk, because their body has a greater need for movement than the kids sitting next to them.

Okay. If we look at the child coming into school and see they're autistic, they need to be in a self-contained classroom, where they're sitting in a Rifton Chair all day long so that they don't get up, well, we didn't give them the opportunity to show us that either A, sure, they need to be in the self-contained classroom, for whatever reason, or B, they can, it's just we need to meet them where they're at. We need to give them these accommodations so that they're able to do it. Yeah, I don't really know if that went anywhere.

I guess, what I'm trying to say is like, there's trial and error. There's trial and error in the real world. And so, we need to allow delayed and disabled kids to be able to go through that, because that is allowing them to have a full human experience, I guess is what I'm saying.

[1:05:50] EF: Yeah. I think I've heard a lot of conversations, too, recently about we're being too trauma-informed. WeÕre, like you said, accommodating too much, but it's, I think I'm grateful that I think this shift also is encouraging us to be more human and to Michelle as an instructor, thinking about students, it starts there, because it starts with allowing clinicians to see the human first and then the disability, and to give ourselves permission Ð

I remember, and I was talking to Michelle about this yesterday about how I used to think it was a really inappropriate to tell a kid you love them. I mean, I tell kids that I love them and I mean it. I genuinely mean it. I think they should deserve to know that.

[1:06:43] ES: Oh, my gosh. I feel that so much because I still feel a little bit weird about it. But I truly, truly do unapologetically love every single one of my kids. Oh, my God. I can't even think about my kids for too long, because I just love them so much. I'm like, every single one of those kids fills a piece of me that was missing before. Every single kid that I meet, I truly believe they were supposed to come into my life because I just Ð I can't help but to love them. They're that perfect. Yeah, I just love to Ð I validate you on that one.

[1:07:29] EF: I think that's really the message is like, it's okay to be human and to understand a human. I feel like, everything I talk about is just helping people be a better human working with humans.

[1:07:39] ES: Yeah. Yeah. I absolutely agree with that. I think when you get into the disabled experience, disability is also human. Disability is probably the one type of marginalized category that pretty much no one can avoid if we're all lucky enough to be Michelle, your 90-year-old neighbors, then Ð

[1:08:12] MD: Living alone and independent and thriving.

[1:08:16] ES: There's a good likelihood that we'll experience disability at that point in our lives. Because our bodies will start to do what our bodies do when we get to that point in our lives. We can't avoid it that way. There's only so much we can do to avoid walking outside of our house and something happening that disables us. Disability is also human. I can say, me being autistic colors every single life experience that I have had and that I'm going to have. Disability does the same. You can't separate disability from being human.

We say this stuff all the time, like, people will say like, ÒOh, well, that can't be an autistic trait. I do that. I feel that way.Ó Well, yeah. I mean, it's a human trait. It's not an alien trait. ItÕs just something that we do sometimes, so it shouldn't feel unfamiliar to you. Just like, you can't say, ÒWell, oh, the disabled person, theyÕre laughing and having fun. Sometimes I laugh and have fun. They can't actually be disabled.Ó Well, yeah, they can, because you can be disabled and laugh and have fun, too.

I can be autistic and enjoy spending time with my loved ones. That doesn't make me not autistic. That means that I have safe spaces to enjoy my time with people, which is great. Yeah. I think that academia, the programs that educate our future clinicians have a lot of growing to do. Because my big beef with graduate school when I was there was how much it doesn't allow for you to have a life outside of graduate school. I had to work. I had stuff that I needed to pay for. I'll say it right away. I didn't have to work to support housing, because I was living with my mom. I was privileged enough to be able to do that.

I had to work to get gas and stuff like that. I was not nearly on as thin of ice as some of my classmates were. I had classmates who were single moms, full-time in graduate school. They had a lot more on the line than I did, okay. I got called out by my graduate program for having work obligations. I had work obligations before I ever enrolled in your program. Yeah, it's like, the humanity of people. It extends to that also, but obviously, also, extends into disability and neurodiversity. There's a lot that graduate programs still have a lot to grow with for sure.

[1:11:26] MD: I have had the joy of watching the shift and playing and doing my part to help with the shift. That's been very, from a personal perspective, incredibly rewarding, right? Because I am Ð I have ADHD. I am neurodiverse. There's not that many colleagues that I know of that work in this space that either are neurodivergent or have disclosed it, right? Because ableism still exists. There's that. At the same time, just in our small college, because my program is housed within the College of Health and Behavioral Sciences, we host neurodivergent instructing courses on how do we meet students that have identified as neurodivergent and set them for success within the graduate school of, I mean, essentially health sciences, like allied health, OTPT speech, and those kinds of things.

But to watch that shift in tide is amazing. To be part of the convention planning and to see that even being embedded in the planning of Ð Amanda, I don't Ð and if you're listening, I don't remember who your counterpart is, so please forgive me. Amanda Steed is one of the chairs for the high red level. But watching younger clinicians, younger researchers, younger faculty pushing for those changes is so profound. For us, personally, as a program, we made sure that we in our first semester, hosted a counseling class for our students, just on not how to be a counselor, but resources available for you, so that you're in a safe space. Because if you as a human are not in a safe space physically, emotionally, mentally, then you can't pour from an empty cup. They can't pour into another being. It's awesome to see this shift happening. You are right, there's so much more that needs to be done. That also means that we need more voices to drive this.

[1:14:02] ES: Yeah. Yeah. I think what's hard about, I'll say, for myself, being autistic and a clinician, and I'm maybe over-exposing a little bit, because I'm coming on this pretty big platform, so I have no control over who hears this. I'm not open about being autistic at work, because I really feel that there is risk that exists there, especially with knowing how Ð at least how co-workers speak about autism and assuming that it reflects how they feel. I feel that if I'm open about being autistic, I will lose credibility no matter what, because it's either, well, you're too close to it, or you're autistic, so you must not actually be as smart or as skilled as you come across, because you're autistic and because you can't possibly do those things. 

Or, well, you say you're autistic, but you're not like these kids. You're not acting like these kids, and you're talking and you're doing all these things, so you must not actually have any insight into this. What you said earlier about feeling you can connect so much to kids who show signs of OCD. I have had that experience at work where I might be Ð there was one time I remember so clearly that I was in a session and an OT was there as well. I've been trying to talk this OT into doing a sensory diet, or a sensory plan for this child. Never ended up happening, but whatever.

We were just having this session, trying to let it play out, figure out, so that I could show this OT what kind of supports that she might need. I don't remember exactly what happened, but there was something that happened with this kid, where she Ð I could feel that she flipped from being in meltdown mode to being in a self-regulating mode. To where it was all out of control, to she's coming back into control. I am not even joking. It was tangible, the shift that happened. It felt like the air was different. It felt like, it went from 90% humidity to 10% humidity. I don't know how else to explain it.

I was there. Right there. I said this to OT. I was like, ÒRight there. Did you feel that? Did you see the difference in what happened there?Ó She was like, ÒI have no idea what you're talking about. No, I don't see it at all. She's having a meltdown. I don't know what you're talking about.Ó That's when I realized like, wow, okay. Is it a Spidey sense, or something? I don't know. I actually do make that joke about having an autistic Spidey sense a lot, because one, I don't watch those movies, so I don't actually know how that stuff works. I feel like, I can just say whatever I want, because it's my thing now.

Anyway, yeah. That moment though, felt like, okay, that's probably as vulnerable as I'm going to be able to get at work. Because that felt like a big thing for me to even point that out. Then to just be met with like, ÒI don't know what you mean.Ó Looking at me like I'm crazy type of thing. That was challenging for me. I feel like, it's a rock and a hard place situation, because yes, I do think it's important for clinicians coming up in the field to see examples of neurodivergent therapists. I mentioned, Rachel Dorsey earlier, I'm so grateful that Rachel Dorsey put herself out there, because it was really Ð the stuff she was doing was really inspiring for me.

A lot of us, and especially those of us, IÕm speaking as a white woman, a lot of autistic people come from other marginalized identities. That is even more of a risk. Because they're already doing so much being a clinician that is a person of color, or queer, or whatever other identities that they carry with them, it's one of those things where it's like, is it fair that not only are we having to, IÕll speak for myself, speaking for myself. Not only am I having to navigate the world as an autistic person, going to work, not using pretty much any of my accommodations, because I don't want to stick out. Listening to just a daily ableism, just run wild around me.

Then I also am expected, in a way, to turn around and spend a lot of emotional energy on educating others. No, nobody asked me to do it. Then if you tell a clinician who, whether they're operating in good faith or not, if they say, ÒWell, where are the neurodivergent voices I'm supposed to listen to?Ó Well, then what? We turn them to like, oh, there's actually nobody there, or like, Michelle made a good point earlier about for a lot of maybe older clinicians, a lot of this stuff is on social media. How do we make it more accessible to those of us who want to stay away from the Facebook group, which is a very respectable decision?

I mean, that's a whole other thing, because I do know lots of autistic ADHD clinicians who are in academia right now, and it's being worked on. There's a research-to-practice pipeline. If you're waiting for a peer-reviewed article to come out in order to tell you every single thing that you need to do, then you're also not Ð you're not serving yourself very well in that situation. There is a little bit of you have to get with it and change with the times, I guess. I don't think that I have any direct suggestions for that part of it.

[1:21:04] EF: I guess, one of my last questions in, again, I don't know if you have an answer for this, but what could a workplace do? Or if you were to think of a workplace environment, where you would feel safe to disclose that, do you feel that there are spaces, or could you see spaces in environments that maybe would allow you to feel comfortable? Or do you feel like, because the overarching culture right now still hasn't caught up, there would still be some of that like, you know what I mean?

[1:21:41] ES: Yeah. Yeah, yeah. I think it's a little bit of both. Well, one, a lot of neurodivergent clinicians that I know either have already or are in the process of, like myself, going private and doing their own thing. Because it feels like, if you don't have coworkers that you need to disclose to, then that takes away a layer of complication. Honestly, I wouldn't mind telling a lot of my families about being autistic. There's a lot of families that I've pretty much told them without saying it. But I'm not going to say it directly, because I don't want it to get back to my co-workers. I don't feel comfortable with that.

I shouldn't have to feel comfortable with that, because it's my personal life. The problem is with this personal thing is that it colors so much of what I do and what I'm passionate about that it feels almost like I'm operating under false pretenses sometimes. I talk so much about autism at work and I try to be a voice for good in that regard, but it almost feels I'm lying a little bit, because I'm not saying this is why I know so much about it.

A big problem right now, this goes for both educational programs and for workplaces is, in order to get accommodations, you have to ask for them. For myself, I didn't have any accommodations in college, or grad school, but I did when I was in high school, because I still have a severe sound hypersensitivity that made my life miserable in school. We had a whole 504 meeting. They said, ÒHere are your accommodations. You can have a separate test space. You can have preferred seating. You can do whatever you want.Ó Well, not whatever I want. The things that they put in there. A. I use A and B a lot. I'm noticing as we're talking.

[1:23:48] EF: It was? I need to know.

[1:23:50] ES: The first thing was, we have my 504 meeting and only two of my teachers showed up. Of course, I'm not going to ask for accommodations from a teacher that doesn't even know what I'm talking about, like who didn't even bother to show up to the 504 meeting. Also, I, in a lot of neurodivergent people, autistic people, especially those who went through therapy, I feel like, I was just societally conditioned this way, like a lot of autistic girls are to pipe down a little bit, be easygoing. I could hardly raise my hand in class to answer a question.

[1:24:38] EF: Or going to ask for it.

[1:24:39] ES: The only teachers who I use accommodations with were the two teachers that showed up. I didn't even go all out with them. I never asked for a separate testing space, even though I would have benefited from it. There was a lot of stuff that I didn't do. Then with my other classes, I quite literally suffered through it. It was traumatizing for me. Because people don't get that when your neurology is different, the way that you experience the world, it's not just for my sensory problems, it's not just that someone chewing gum next to me is annoying. It puts my body into a fight, flight, freeze, fawn response. It makes me feel like I am under attack. I don't think that people realize that. It's not something that if you just expose me to it enough times, it's just going to go away.

Even if I can hide it, I am still feeling literally all of the adrenaline, all of the feelings like, something is going to hurt me that I was otherwise experiencing. Anyway, that was a separate soapbox. Because I'm just tired of seeing these goals. I'm just tired of it. I believe that that is one of the biggest problems is that it's the responsibility of the disabled person to say, ÒThis is what I need.Ó

Now, do I know exactly what workplace policies could change in order to fix this? No, I don't. I really don't know. I think that what would help is if we, I guess, in higher education and at work, if we're a little more Ð in school, I think that the conversation about disability should have been more explicit. It's a big problem that I have with our training as SLPs is that I don't feel like I heard the word disability more than a couple of times. I don't think that we are really understanding when we enter the field that we are working with disabled people. I don't think that we understand what that means. We certainly don't get any education on the history of disability and disability advocacy and disability justice. We don't get any of that, which I think is a huge massive disservice.

But because we don't talk about it, the students who do experience disability, like, we're not even sure if the person that we disclose that to is going to have any reference point for that. Then there's, if I'm able to tell you that I'm disabled, then you might think, ÒThat must not be that bad, because you can tell me, and you look normal.Ó Just having the conversation about what accommodations are, what disability is. It's not just, ÒOh. Well, if you need accommodations, just ask.Ó Like, here are the accommodations that we have available to you. Here are some examples. We have modified the workday for some people. We have reduced productivity expectations for some people without any consequences. You know what an accommodation that I would love? I would love an accommodation to not have to see kids at daycare. That'd be great. Oh, my God. It is so Ð

[1:28:35] EF: Had them utilize there. Yeah.

[1:28:37] ES: Yeah. It's overstimulating. It's upsetting a lot of times to see the way that kids are treated at daycare. It's just hard. I would love that as an accommodation. Now I'm just trying to think of what other accommodations I would like.

[1:28:52] EF: This is another conversation, like making it not Ð

[1:28:55] ES: Yeah. Just knowing. Just instead of saying, go to HR if you need accommodations. Actually, talking about, hey, can we have HR come here and say, what is considered a reasonable accommodation under the ADA in the context of our workplace? I think that it's a cold, cruel world out here. I think that there's an idea Ð it's not an uncommon idea that people say like, ÒWell, I had to suffer through this, so everybody else has to also.Ó That's not true. That's not true. If you had to suffer through that, then I'm sorry. I have a lot of compassion for you. You shouldn't have had to suffer through that. You shouldn't have had to struggle and suffer to get to the point where you're at.

If you did have to, then let's put our heads together and think about what would have helped you back then, so that we can either help you right now, or make life a little bit better for the people who are coming after you. I don't think that people realize that a lot of neurotypical, able-bodied people could probably benefit from some kind of accommodation as well, whether or not they even realize it. A lot of people have some quirk about their executive functioning. Lots of people have, you know, it's hard for me to focus in this situation, or it's hard for me to switch between tasks, or maybe I'm just projecting onto other people. I don't think it's that uncommon.

You shouldn't have to suffer through that. Accommodations are not something that you should have to prove yourself for. They're not something that you should have to earn. It's like you were saying, we need to be not just better humans, but just more human. You can't come into a therapy field and not bring your humanity into it. That would be cold. I think a lot of times, it is cold. It feels like that to me. I guess, maybe that's the take-home. It's like, it doesn't have to be so cold. Your workplace, your work life doesn't have to be so cold either. I just think that we have a long way to go.

I guess, if anyone's listening who isn't a position of Ð if you're in a position of authority over these types of workplace policies, if you're a private practice owner and leading a team of clinicians, if you're a team manager of some kind, those are things that you can do. Those are things that you can look into the ADA and see what is available and just tell your team. When you open up that conversation, it's going to be Ð it takes away a layer of fear for the people who need it, for sure, because it's not Ð because then, if I'm having to just introduce this idea to my higher ups, then I have to come in with all of this background knowledge, because I don't know how much my HR person actually knows about the ADA. But if I already know that she does know, okay, great. It makes it a little bit easier. Yeah.

[1:32:15] MD: Emily, thank you. Thank you, thank you, thank you for being you, for being brave, for standing on the edge of the abyss and shouting hope into the future.

[1:32:27] ES: Thank you so much. It is such an honor to get to be here, to share this time with y'all. It was so crazy to me coming in here thinking like, ÒOh, wow. I've been listening to y'all's voices for over three years now. Now I get to come here and talk to y'all.Ó It's so cool. I feel like, we're all friends now.

[1:32:50] MD: Yes. Okay. Thank you. All right. Folks, I am going to have links to her podcast episodes and all of the places and all of the faces, but check Emily Starling out on Neurotwist Podcast, check out her Instagram, all of the handles. Emily, with my whole heart, thank you.

[1:33:11] ES: Thank you.

[END OF INTERVIEW]

[1:33:14] 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.

[OUTRO]

[1:33:54] MD: Feeding Matters guides 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. To date, 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.

[1:34:46] MD: 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 PFDs 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 270		Transcript

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