Skittles, A Rubik’s Cube, And The ABA Rabbit Hole: A Sip and A Candid Chat with Asia Johnson (Part I)

ABA on Tap is proud to present Asia Johnson (Part 1 of 2):

A two-pound baby in the NICU. A young mom in a demanding academic track. Years of sleepless nights, confusing behaviors, and a system full of waitlists and half-answers. Asia Johnson joins us to share the throughline that connects all of it-- learning how to advocate for her daughter, and then bringing that same urgency and empathy into the ABA field as an RBT and later a BCBA.

In this pour of ABA on Tap, Mike, Dan and Asia  get real about what families feel after an autism diagnosis, especially when the people around them do not understand ASD, and when community stigma makes support harder to access. Asia breaks down why the five stages of grief are not just theory, but a practical tool for parent support and for clinicians who want to teach skills without ignoring the emotional load caregivers carry. We also talk about acceptance as a daily practice: redefining happiness, building structure, and choosing goals that protect dignity and independence.

From masking and stimming to school accommodations and powerful self-advocacy, Asia gives vivid examples of what growing up autistic can look like for a level one pre-teen. Then we dig into culturally responsive ABA: dialect, identity, and why therapy must meet a child where they are rather than sanding down culture to fit a narrow idea of “proper.” Finally, Asia shares what she has seen when ABA goes wrong and why ethical leadership has to interrupt harmful clinic cultures before they reproduce.

Enjoy this first pour, return for part 2, share this with a parent or clinician who needs it, subscribe and leave a review with your take. Tell us---what should ethical ABA protect first?

Tune in, drink up and ALWAYS analyze responsibly.

Transcript

Welcome And Meet Asia Johnson

SPEAKER_03 0:01

Welcome to ABA on tap. I'm Mike Ribio with Dan Lowry. So without further ado, sit back, relax, and always analyze responsibly. All right, all right. Welcome back to yet another installment of ABA on tap. I am your ever-grateful co-host, Mike Rubio, always alongside Mr. Dan Lowry. Mr. Dan, how you doing today, sir?

SPEAKER_02 0:45

Doing great, excited for today's episodes, brother. Good to see you.

SPEAKER_03 0:48

Good to see you too. As usual, we were very lucky to have Suzanne Judgewick, who does all our scheduling and finds our guests. We've got another powerhouse today, somebody who's gonna who I'm sure her experience uh we can all relate to. She's done a little bit of everything and now finds herself speaking very clearly on uh issues of mentorship and leadership and individual cultural experiences. Really, really excited to learn from our guest today. Without further ado, Asia Johnson. Hello, hello, hello, and welcome. Thank you so much for your time. How are you today?

SPEAKER_00 1:28

I'm doing good. Thank you for having me.

SPEAKER_03 1:30

Yeah, thank you. Again, uh, we know that it's it's we record on Sundays, so we're really grateful for our guests to give us a little bit of their weekend. Really, really excited uh for our conversation today.

Premature Birth And Early Worries

SPEAKER_03 1:41

We'd like to start with the origin story. So we found out a a little bit about a lot of different things about you as we did our research online, and really excited to understand how all those diverse experiences have culminated into what you're doing now. Because it really looks like you uh had a really strong voice even as an RBT before you were a BCBA and you know, very, very visible uh profile online. So excited to learn about all your experiences and again how they've culminated, and we'll take it from there. So let's pass it over to you. Tell us how it all started.

SPEAKER_00 2:13

Yeah, I think the the best way to go about this is just like painting a picture of a mom who was in school at the time. I was a chem pre-made major. I also was a dual major instead of.

SPEAKER_03 2:27

I love these, I love these stories. I love the pre-med engineering. Go ahead.

SPEAKER_00 2:31

Yeah. And my my daughter, my second child, was she was born premature, so really small, two-pound baby. And I think I was hyper focused on like, will she hit these milestones? I had a horrendous pregnancy, and they told me that she would have everything that you can think of, including like spinal bifula, disproportionate limbs, offered really strongly for me to terminate my pregnancy. I was like, nope, gonna kick through it, gonna figure it out. And so a really, really dark time of my life. I was really, really young as well. I was 21 at the time, and I was just in a period of like, okay, one, I'm not gonna terminate my child. And so, how do I figure out ahead of time how to help her? And I like in my mind had already mentally prepared she would come out with disproportionate limbs, cleft palate, all of these things. She came out two pounds, she was breathing on her own, she needed a like a nasal cannula, but she was like in the NICU for like not too long. Like she moved to like an open crib rather quickly, so really, really strong trooper. Wow. Um, but again, hyper focused on like her hitting those milestones. Um, and so when she wasn't hitting some of them, I didn't think much of it. I just thought like she has to catch up. She was born at like seven months, she got time to grow. And so she started exhibiting symptoms of autism at the time, never heard of autism, didn't know what it was. I just was glad she didn't have spinobify, cleft palate, and all the other things that they stated she would have.

SPEAKER_01 4:04

Sure.

SPEAKER_00 4:05

Um, and so when she got to like right around like the age of two, I think at that stage it was like so hard as a mother. Like, I was obviously in a rigorous like academic career, and like it was just really, really tough figuring out how to manage like some of her behaviors. She was progressing differently than my firstborn. And I remember calling my mom and being like, something's not right, I can't put my finger on it, like something's off. And she was like, Well, you've been hyper focused on like her not meeting these milestones. Like, maybe you're like overanalyzing things. And I was like, No, like something's not right. And then like she hit three, and like, man, like she wouldn't sleep. It was just like so, so hard. My mom's house like caught fire. She had to come live with me for like 90 days. I believe she was here for like three, four months. During that three, four month window, she was like, Yeah. Trying to tell you, mom. Yes. And I was just like, girl, like I've been telling you this for like months. Like, and so at that point, I tried to give her like all of these different like diagnoses and like evaluations. And I was a Medicaid recipient at the time. Wait list was like crazy long. And then as a Medicaid recipient, she couldn't go to a psychiatrist until she was like six. And so I was like, man, how do I get her help? They originally diagnosed her with like ODD, sibling rivalry, things like that, ADHD. And I was like, it has to be like something more to this puzzle. And so, like, we had waitlisted her for a while, and then one of my friends was like working for like one of the big

Chasing A Diagnosis And Answers

SPEAKER_00 5:46

box companies. They sent her like this like a reinforcement pack. And I was like, what the hell is that? Like, I was like, what are you doing? Right. And she was like, No, this is called ABA. And I started looking into ABA, and I was like, Oh, like Sage literally meets every box on this checklist of like a kid that would have autism. And so, like, I was like, Okay, I'm gonna get a job as an RBT. Like, I want to see more. I want to understand like how I can help her. I couldn't get help from the pediatrician. I couldn't get help. She was in early starts, and I really, for the life of me, I didn't know what they were doing to help her. Like, I'm just be honest with you. And I was like, I'm gonna figure it out, see what it is. I started as an RBT, fell in love with my first client, and then like literally went up every tier model there was in ABA. Like, I'm talking like the nights I couldn't get her to go to sleep. She was like at one point on medicine to even like sleep, and it was like barely working. I had like research papers all over the living room. Like it was crazy wild. Like looking back on like what I was trying to do to help her flash forward, like right around the age of 10, it got to the point where like IEP wise, she started like meaning less and less servicing. And I was like, okay, like we got you to the other side. Like, how do I get back to like what I love and like what I want to be a part of? And that's kind of how I transitioned over to more of the business executive side of things and figured out how to like figure out like beyond my help for you and advocacy for other parents in the field, how can I also tie into what's passionate for me, which is leadership?

SPEAKER_02 7:20

Wow, that's that's a lot. And it's cool. We've we've seen this with a few guests that you know, those personal anecdotes. They had no idea what you know this field was even about. And then based on having a a child or a family member diagnosed with autism, it kind of changed their whole trajectory, as it sounds like it did you. So before she got the diagnosis of autism, were you really well versed in what autism was, or was it like, wait, what is this now?

SPEAKER_00 7:48

So by the time the diagnosis came, I was because I had already become like an RBT in the school systems. I had looked into like what job it was and like had gone down these rabbit holes of like what is this brent of psychology? And so I think like once the diagnosis came, it was more so like a I already knew, I just needed it on paper.

SPEAKER_02 8:12

But the uh but the reinforcement box was kind of your first like foyer into the ABA realm and like that kind of whole thing. So before that, maybe it was kind of new to you.

SPEAKER_00 8:23

Is that exactly? It was like something one, I think within the black community as a whole, it's not something that's typically spoken of, um, anything intellectual, but autism isn't something that is really prominent or like people talk about it. So yeah, totally brand new.

SPEAKER_02 8:40

So, what was in this reinforcement box?

SPEAKER_00 8:43

If you don't mind me asking, it's funny, it's funny because like when she came to my house, which my friend, she's now an occupational therapist, but when she came, I was like, this is crazy. Like, what are you gonna do with these things? Like, it was like a spinning top, like a rubber band. It was like crazy like stuff. It was like a puzzle, a rubrics cube. And I was like, her name was Sinee. I was like, Sinee, like what, like, what are you doing with this? Like, it's it's not like you're working with kids. I'm gonna be honest with you. If it was like you're like training an animal, like, what do you mean? Because she was like, Yeah, you give them like candy and you like you do this. And I was like, What? Like, I just couldn't wrap my head around it, right? And so at that point, like we laughed about it, and she was like, No, I'm telling you, like, she was like, This kid came in, she was like, they had no skills, and like Skittles changed their life, and I was like, What?

SPEAKER_02 9:38

The the reason that I ask is you know, we've been running parent groups at you know the various ABA companies for maybe 10 years that I've worked at and now that that we run, and I find that you know, when we start parent groups, historically we would jump right into the ABA stuff, and maybe over the last three, four years of running these parent groups, maybe a little less than that, I've kind of changed the trajectory of the way that the groups run. And in the beginning, it's more of like talking a little bit about what ASD is, but also giving parents resources because, like you said, your child wasn't sleeping, and a lot of and I guess you had by the time your child got this diagnosis a better understanding of what autism is or what ABA is. Uh but a lot of the parents that we work with, they just got a diagnosis kind of like your daughter did, and they have no idea about what ABA is, about what autism is. Sometimes, like you said, you had a child before, so they're like, This child isn't doing a lot of things that my my other child did, or even different, this is their first child, and they're like, What is normal? Is this is my child supposed to be doing this? Is my child not supposed to be doing that? And there's just a whole lot of confusion about what the diagnosis means, what the process is gonna look like. Like you said, what are these therapies? What are these people doing in my home? So there's just kind of a lot of confusion, which leads to a lot of stress from parents. And what I found useful the first little bit is just kind of trying to alleviate that stress and bring parents down to a level that they can be receptive of the services because it seems like so often parents are just so stressed out, so confused that they don't know what's going on, and it's just super overwhelming. So, did you is that something you felt maybe before you became the RBT? Did you feel just overwhelmed and and stressed, and then you kind of got as you got more knowledge, you felt a little bit more empowered, or do you feel like you were never like super stressed out about what was going on in the situation?

SPEAKER_00 11:39

I don't know, I would be like remiss if I said I wasn't like super stressed out. And then again, like I was like trying to tell my mom, like, this is what I'm seeing, like this is what I'm experiencing. And like the sibling rivalry was real, like in a sense of like aggressive behaviors towards like her older sister. But sometimes you'll see like kids with ASD would mimic behaviors like on a grander scale than just like simple motor imitation where like they would see one child do things and they will like fall down, or like you know, different things like that. Like McKenzie would like go to the bathroom and Sage would be like, I have to go to the bathroom. I'm like, and she'll like McKenzie will be sick and she'll like vomit and she'll like make herself vomit. And I'm like, why does she keep doing this? Or like McKinsey would like trip and she'll be like, uh uh, and then she'll trip. And I was like, what is happening? Like, I get kids' copy behaviors, but this is like on steroids, like it was crazy to witness.

SPEAKER_02 12:35

So with that, I guess I have two questions, and then I'll pass it to you, Mike, because I know I've been hogging hogging the questions here. If you kind of look back, so your your younger daughter is how old now, if you don't mind me asking?

SPEAKER_00 12:49

Yeah, she's 12.

SPEAKER_02 12:50

12. So you look back like 10 years ago or something like that, and you mentioned that you felt a lot of distress and maybe the feelings of being feeling overwhelmed as a parent of these behaviors are a little different, as you want nothing more as a mom than to help your child and provide her comfort, and maybe you're running into some roadblocks there. Relating to if you were to give advice to a parent now, what would your maybe one, two, three main bits of advice be of a parent that maybe doesn't have the diagnosis, like your daughter didn't in the beginning, but you're seeing a lot of differences in behavior, or a parent just got the diagnosis and they don't know kind of what to do, they're feeling stressed. Coming from a parent who's, like you said, kind of on the other side of it now, with your knowledge, what would be some things you would what would be your advice to parents that are in your shoes 10 years ago?

Advice For Parents Facing Grief

SPEAKER_00 13:42

Honestly, I think that this is like a really important piece for me because I feel that like the the biggest advice to parents is to really study what like the five stages of grief look like. And the reason why I say that is because as a parent, we don't talk a lot about like what is it like to experience one that maybe your vision for your child has has diminished, right? Like you don't see that being possible at some stages of it. There are portions where like the denial piece may sit in, right? The guilt piece may sit in. I was diagnosed with epilepsy at the time, and so like the reason why they were saying she had all of these like things that was gonna like be spinobify, spell palate, they like I mean cliff palate, they were like saying you're you're having to get all of these MRIs, you're having to take this medication, like you're basically giving her the higher likelihood of being like either disabled in some way, shape, or form, right? And so like I feel like I had to like go through each of those stages until I reach the stage of acceptance. And I think that like several parents, especially when you're in like the parent education stage of you're trying to like teach them these different things. Some people are just not there. We talk about like motivational interviewing and figuring out what is the parent's values overall, and I think it literally roots back to the five stages of grief and figuring out where they fall within those categories.

SPEAKER_02 15:05

Those five stages of grief, that that makes a lot of sense. We would talk about that in our parent groups. It's it's tricky, right? Because the first one's denial, and it's hard to tell somebody they're in denial because they're in denial, right? I would see it a lot with we would run dads groups concurrently because the parent groups oftentimes would be moms because it would be more during working hours, and a lot of times they were the primary caregivers, so they were more available, and they eventually were like, You gotta talk to my husband. My husband won't listen to me, he'll listen to you all. So we would create these dads groups, and it was very interesting from the dad side of things, because I think you would see again, this is kind of stereotyping here, but more commonly denial or lack of acceptance from from the dads, maybe because it was oftentimes their sons, so you have the same-sex parent, and a lot of times they would say, Well, you know, I didn't talk till I was four or something like that. They'll just grow out of it, they'll just be fine, you know, that that kind of thing. So when we would go over those Kubler Ross five stages of grief, uh like I totally agree. It it seems so important that denial stage was always interesting because I've felt like I don't know if you remember that, Mike. I you you don't want to tell you don't want to trivialize people's concerns, like when they're in denial, you want to acknowledge it and you don't want to say, Oh yeah, your child might grow out of it. You don't want to say no, your child might not. You might want to get these supports, but also trying to frame it in a way of, yeah, you might be right with with what your perspective is, but would these supports even hurt? Like, is it still worth trying these things? I don't know if you have any remembrance or thoughts on that, and then be capacitation.

SPEAKER_03 16:45

Well, I mean, I I I think about dads in general, that's common. I again don't want to overly stereotype, but I I think I still confront that, you know, it's pretty common to find moms that maybe see the diagnostic more as a relief, and then dads are sitting in a greater uh depth of of denial. I I guess that makes me think of your experience, Asia. It makes me think of that uh what's the what's that popular poem, Welcome to Holland? Oh yes, Welcome to Holland. In your case, you were already destined for Holland, and then it didn't turn out that way. So would you say that that I mean what was it a sense of relief to to know that you had been through all these concerns? Maybe you were overly prepared for over concerns about your daughter, and then two, three years later it's like, oh no, it's this is actually autism. Talk a little bit about that contrast because it was sort of a blessing in disguise that you were overly prepared for this, and good news is the medical science was was off base and they were wrong, but then it still maybe kept you at bay or prepared or potentiated for that two, three years later. What what was that contrast for you? I mean, uh autism versus spina bifida, yeah. Not to not to put it so plainly, but that's kind of what you had to reconcile. It was oh, she doesn't have this, great. Oh, she has this. Um what did that feel like?

SPEAKER_00 18:05

Yeah. I

What Acceptance Looks Like At Home

SPEAKER_00 18:07

think I think the biggest area for me was like acceptance and just like my family and community. Even now, like Sage is more like Sage is an advocate for herself, like IP, the girl like runs the show.

SPEAKER_02 18:25

That's good self-advocacy, right?

SPEAKER_00 18:27

Yes, she definitely is a self-advocate, but like because she is level one, sometimes her like deficits aren't as obvious to others, and then there's this stigma that ASD may be similar to like Down syndrome of something that's like more visible on the surface, and so she never had like any visual things where a person can look at her and tell she's on a spectrum for autism. And so even now she battles with like people lacking understanding surrounding like ASD. And so, like for me, I would go to like family events. Sage never liked large crowds, and she wasn't a kid that like went to the spacewalks or like wanted to be around the other kids, and they would be like, put her in there, I'm like, she doesn't like it. And like they were like, No, just put her in there, I'm like, she doesn't like it. And I constantly had to like do that. And I remember like one of my aunts like picked her off and like put her in there, and like the kids were like attacked, they were like bleeding, like she had like scratched them up, like it was like a really, really rough like family event. And like I remember like having to be like, listen, like I understand, like you don't understand what ASD is, and like you are misinformed around what it looks like and what the characteristics of someone with ASD is, but this is my reality. And like if I tell you she's uncomfortable, you have to distrust me, unless you want to go out and do your own research, right? And so it was like really difficult to get people to like really grapple with and understand like what ASD looked like for her and even in girls, it just manifests different in girls. And so I think for me, it was more so like I knew it, but I didn't know how to educate others on it, and I didn't know how to advocate for her in that community sense.

SPEAKER_02 20:14

Can I I have one more question because I think there's a lot of depth here, yeah. There's a lot of depth on that, and we'll spend a lot of time on cultural and and family participation because what you're talking about has so much relevance to the greater autism uh community as a whole. You said the Cubelar's five stages of grief, and it seems like maybe you've gotten to acceptance. And please correct me if you feel like I'm speaking incorrectly. Assuming that you have, if you feel like you're in that phase, can you talk about what that means to you? Which what acceptance of your child having autism means to you or another parent? So if another parent's not there, what that might mean eventually if they can what if and when they get there.

SPEAKER_00 20:55

Yeah, I think acceptance is often confused with the fact that like you just like accept the diagnosis and you're okay with it. I think it's the reality that like even though this isn't what you anticipated for your life, this is the reality of where we're at. And so being that this is where we're at, if we want to seek happiness, one figuring out what does happiness look like, right? Like, why I was I at one point in the state of depression and figure out like the root cause. Um, really work through that. I think like the first time I really like experienced, like I think sorrow was like I read this book. It was called Let Me Hear Your Voice by Catherine. And she talked about like feeling guilt surrounding like her child's diagnosis. And I remember like sitting on my mom's couch, just like sobbing, like feeling like I really was the cause of her having ASD. And I think like once I experienced that and I kind of like let out like that really good cry, and I started to see like all of the work, all of the structure, all of the supports that I've put in place years and years on in, like it's paying off. Like, do she still have areas where she can grow in absolutely but i think that like myself as well as like her in her family accepts her for who she is and we just know like this is just sage and like some of the things like even though like it still to this day like may piss me off or annoy me when she do things I'm just like whatever it is what it is this is like not gonna change and you just have to like figure out how to like deal with it like one thing for example like sage does this thing where me and my oldest daughter like we joke about it like we like say like she has like these slot like behaviors like if she's like destined to do something or on her mind to do something she doesn't have any problem doing it but like the minute you say like hey sage can you or can you like anything you ask her as like a command or a direct statement or question she's like slowly stretching and like slowly getting and you're like come on girl like we need to act with a little bit of urgency and she's like well I'm stretching and it's like girl like you know like and it's like it's doesn't matter like what it is like well she doesn't want to pull a muscle Asia come on she gotta warm up she's getting ready to do a good job you don't jump into a basketball game without stretching first you might pull something yes and so that is her and like I thought like for the longest so she used to play gymnastics and she was in like competition so she was doing compulsory gymnastics. Oh wow and everybody would talk about how like she's so amazing at it and she really was so so good at it but they left the fact out or they didn't understand it like even though gymnastics a team sport is an individual competition right and so like she thrived in that individual competition setting and then like when it came down to like her discipline her discipline has always been top 10 because she's super rigid naturally right and so like anytime her coach would give her feedback you can see her cringe inside of like I have this together don't tell me what to do and so like feedback for her like a feedback loop was almost absent. She's grown so much in that regard but like it's just like the simple things materials like the Leotard like before each competition like rolling her sleeves up up until like they called her name and she'll pull them down she'd get points deducted for stuff like that. She like learned how to just cope and mask through life in her own ways. And so yeah just different quirks that she do still kind of tick me off sometimes but we accept it.

SPEAKER_03 24:34

And then that's adolescence though, right? I mean now that that may not be ASD that just might be a 12 year old and I love talking about that kind of stuff because it is I I don't have the experience you do as a parent so I imagine that there are certain idiosyncrasies certain quirks that you can say okay I think that's diagnostic related and then now you're just talking about a a 12 year old who's like oh you want to do something I bet if I delay it long enough you'll jump in and help me or finish it for me or whatever it is you know so it's really neat to see that I'm fascinated. I've got two teenagers that sometimes they're not on the spectrum and sometimes they don't delay things they they love delaying things because they know I'm gonna get ahead of them and say I can't wait for you I'm gonna go do this for you. I'm fascinated to to learn you talked about masking and that's a you know that's a really important topic. It's something

Masking, Stimming, And Self-Advocacy

SPEAKER_03 25:19

that if we're not careful as ABA professionals we might be imposing that on people. And then you're talking about a really practical application of masking that was more self-directed. How did your daughter learn those things? How did you help her how did you teach her those things? There's a lot of really intrinsic motivation in there to say oh man I hate these sleeves down but I I know that I'm gonna get points deducted so I'm gonna bring them down just for the performance and then I'm gonna be able to make myself comfortable again. That is really cool mentation.

SPEAKER_00 25:51

I mean that is I don't know that we ever analyze it like that as behavior analysts but there's a lot of processing you know internal mental state if you will that that somebody's going through to achieve that how did tell us a little bit more about that how did she learn how did you teach her what did that look like in some of these things we I haven't taught Sage any of these things it's more so and I've asked her like how'd you think of that or like what made you do those different things until like for example she used to engage in like a lot of like stereotypy where she would like body rock a lot and she naturally likes music and dance and rhythmic exercises and activities. And so like she started like doing like this like shoulder rock like kind of like you're like doing a dance move until like people don't realize she's stimming because that's her way of like not outwardly doing more of the stereotype like the stereotypes of like body rocking her hand flapping happens on occasion and she states that she doesn't know how to like stop that and she wants to learn how to stop it or like we were recently at so both of my kids are like really big on junior beta. It's like more of a southern thing I don't know if y'all are familiar with Junior beta but never heard of it. What is that it's like a leadership type of summit where kids do like different like STEM activities, leadership and creativity activities. And so my oldest daughter is president and my young sage is secretary. And so they went to like this leadership summit if you can think of like a baby ABA conference for kids like that's like the type of vibe. And so we were at like this restaurant and she was doing this like thing with her eyes and like she was like stimming but I hadn't seen it before and I was like why'd you just do that? I was like wondering like do you like what made you do that and she was like do what and I was like the thing like you did with your eyes like you were doing like that thing and she was like I always do that and I was like really but this is like around like the time where like she was like punished from like cell phones and so typically you see Sage she has like the phone in her face and she's like talking to her imaginary followers and things like that. And like during this conference is a week of her not having her phone I'm able to like see what her actual activities look like beyond hi friends, hi followers right and like my youngest daughter she's so funny she was like you need to pay attention more she always does that and I was like oh and Sage was like yeah she doesn't know why she does it but she feels like she does it when she's excited or like really really happy and so things like that I think that she's just more self-aware of of things. And I think that she maybe in her mind that's her way of just kind of like dealing with just like the inner workings of environments. And so like remember I talked about like when she was younger she would mimic behaviors of her older sister. I think based on the environment Sage is in she singles out like a target and that's who she becomes and so like in an academic setting she's very very studious she becomes the pupil of the class and she's like the teacher's pet like in every class. And if she's not in a class where it's like a teacher that's like a master teacher she's gonna complain to the principal and she's gonna want to be in a class like that during her IEP meetings she'll advocate for like particular seats in the classroom like she curates her environment so that she makes the best impact. And so right now they're in like a they're more online versus brick and mortar we made this decision about like three years ago to switch them from brick and mortar settings and they go to like this co-working space where like a facilitator makes sure they go to their online like classes and things like that. They still have to take like state testing note. And so with her state testing she knew her accommodations were like small group testing and she gets like a seat in the front of the class and things like that. And day one apparently they did not know her accommodations and she kind of lost it like she was like this isn't gonna work for me and can't take my test like this like there was like one guy child who was next to her that was asking her questions and she later found out like the child had ASD and she was like I feel totally bad but she was like I have to advocate for myself she was like they were high distraction for me and so I think she's just self-aware it sounds like maybe is she a little rigid might be that might have a negative connotation to it but maybe rule governed is that a fair way to say it like if there's a rule she wants to follow that rule and if it deviates from that rule maybe that creates a little conflict in her head she is she's very rule governed even to the sense of like the co-working space mind you is an individual contribution all of these kids are on their own laptops they're there's some all they're in a they're grouped in the same classroom like grade size and she was like all these kids are using AI and like they need to do something about this this is like good like she she like wanted me to like reach out to like the director and she was like telling the director like this is the time to come in like I don't like don't tell her we have an AI note taker for this she is so funny but she's always been like this like when we were the last final year of brick and mortar she qualified for like pull out services and she would have breaks but because she is studious she was straight a student they never felt the need that she needed to be taken out of the classroom for a break. And so she would get so mad about that because she would be like listen I'm working really hard and I really need my break even though you don't think I need my break I really need my break like it's really overstimulating sometimes being in these classrooms and one of them like the principal was like well we can get like a sheet where you can log like whether or not they're coming to get you from the classes and she had two because it was ELA spade and Matt Spaid. And like one of the weeks like the lady I think was like so nervous about like missing Sage like she would like text me and be like I can't get to her and I'll be like it's okay just let her know you can't get to her like I don't like I care but not really like I need her to like be able to kind of advocate and so she asked Sage like to sign as to like she was there because Sage would have to like sign this box to like log that they actually came and pulled her for her stuff. Okay. And this little girl wrote like operate with integrity and I was like oh my god she's like that kid and so she's like super just like rule govern and like I think that's the best way to put it I definitely say rigid. So like it can be like a gift and a curse all at the same time.

SPEAKER_03 32:54

It always is that might be a diagnostic trait that's actually working for her and then maybe once in a while you see it work against her because it overwhelms her is that fair to say yeah like in the online setting she doesn't have like a quick connection to her teacher so she'll have to like email them if she has a concern or she'll have to like set up a time to talk to them.

SPEAKER_00 33:17

And I always have to tell her like Sage like they're not gonna respond instantaneously like you have to give them some time and she'll like sit there like before they had the co-working space I obviously had a job and so like I would have like designated times where I would like be like okay this is when I'm gonna do homework help. This is when I'm gonna help you all and like sometimes she would come in my office and she was like I need help and I'm like okay well I'll help you at three o'clock and she'll like okay and she'll sit there and I was like you can't sit here like you have to leave interesting figure out life and she wouldn't move on. She would just like wait with the computer open on that screen until I was able to help her.

SPEAKER_03 33:55

Interesting. Yeah that's an interesting contrast there I like that distinction too because it you know that's where in that question of of what you know where is it an adolescent or a child of a certain age versus where is the diagnostic trait that could be taking effect and that's a really good example you're giving there.

SPEAKER_02 34:11

I remember this actually came up at at the previous company that that we kind of uh ran that the the juxtaposition of task completion versus transitions. So I remember we would have some clients that we would have transitions goals for and that was a we actually looked at rewording the goals but you know I wouldn't even call it historical AB I think it's very still very common that people have you know transitions goals right when timer goes off or instructor says time to come activities done client will transition to new activity with you know without maladaptive behavior within one minute or something like that. Juxtapose that with task completion and right we would have sometimes it would take longer and we would have these clients that were really engaged in the activity that they were doing and sometimes it might have even been work and now we're saying okay you need to stop that and transition to the next activity and they're like wait no we're not done with that activity. And I remember you having some um some interesting thoughts on that because I think so often in in ABA and in programming we're just like nope it's the program that's what we need to do and they need to transition and you kind of talked a little more about the nuance and the the functionality or the applicability to what's going on in that moment.

SPEAKER_03 35:25

So is it transitioning activities or transitioning to the next center? Can that child take that same activity to the next center so that they're with their peers? I mean there's so many different variations of what is the goal. I perfect segue to I think you're gonna give us a really good insight into this Asia you talked about the spacewalk earlier and as we and then you talked a lot about milestones as you were preparing with your prenatal care and some of the things that were being anticipated and that's one of the things that I think is difficult for us in ABA because if our clients are exp they're exhibiting a certain amount of developmental delay it's easy to measure that in our assessment tools and then say oh okay so they're not doing 50 words expressive words independently as some loose childhood measure the goal is going to be for them to have 50 words. Okay that's a beautiful goal how are we gonna get there and is this child actually gonna just use words or is that what we're gonna focus on or do we have to pull back and focus on gestures and just basic joint attention cues or so in your example of the spacewalk this idea that hey look we're at a party all these kids of a certain age they like being in there they're gonna enjoy it just get her in there and then she'll be fine and then you try it brute force and nope you get the result that you I told you so you see I told you she's not a spacewalk kid. But it's so hard for us to understand that sometimes as professionals because we're drawing this direct line into this common experience of childhood or milestones I I don't have a question. Absolutely but I think I I see you nodding in recognition let me go talk to us about that what I'm sure you have a million examples of where you've had to contend with hey your child's not doing this and the idea that you know what they're not gonna do it that way. She's gonna achieve it in this other way and then we're gonna have to reconcile or deal with the social significance of that. So I'll let you take over here.

SPEAKER_00 37:18

Yeah I think Sage is like a unique individual to consider because like Sage is this 12 year old chick with just like the utmost swagger she's like runway model really fit athletic like charismatic and like so she is a kid magnet like naturally like kids just gravitate towards her but she's so like picky and like we had to like work on just like her reciprocal conversations with others like someone will come up to her and you know the natural thing like younger kids will say like can you be my friend sage would be like well wait like tell me about yourself like what's your favorite activity what's your you know like fill out this friend application yes and we have to like tell her like you'll naturally get to know them like just give them time right like people evolve but like she's like yeah no and so like she has all of these like friend groups and nuggets of individuals she's collected over the years but when it comes down to like social interactions where it's combined like combinations of them all she still doesn't like a birthday party where all of her friends are in one space because she finds it overwhelming. And so like her younger sister had a birthday party and I always give like the older ones like hey you can invite like two or three kids that you are also friends with because they're age gaps like with like the nine year old is completely different. And Sage only picks one. She always like I have to figure out which one I want and I'm like well you can invite two to three like it's fine. She was like no I can't because I don't like like she was like one time you invited like two or three of my friends and she was like I felt like I was like overwhelmed I had to be one person with and I was like you can just be yourself. She's like no like you don't get it like it's so hard for her to like be able to like split her attention amongst all of those individuals and so she rather is like one off play date moments or like one off opportunities with individuals. So anytime she's in a group format like you can even see her like kind of like I can't explain like she'll like be like strunken and like highly stressed out like she does not do well in those settings.

SPEAKER_02 39:31

Seems like almost like intentional masking like she's like okay well this is what this person needs from me so I'm gonna change my behavior to be like this person. Yes now when this person talks now I need to consciously change who I am for this person. That probably is a pretty mental a high mental load that she has to do when she's in group settings.

SPEAKER_00 39:49

And that's what I meant by like even though like before it was really obvious that she was like oh Mackenzie stumbled I'm gonna stumble right like it was pretty obvious but like now like depending on which friend group she's with she does morph into these different individuals and like that's one of the highest things on our list to kind of like help her to be able to dissect and understand is that you can literally just be yourself. And like one of her friends now like she talks about like oh I can totally be myself with TJ like TJ is one of my close friends' friends and they have like so many commonalities that's just like natural and so like she doesn't have to like pretend like even if she is masking that's really who she is like the girl is like into day trading and so like this summer she was like I literally want to make a thousand dollars she's like an entrepreneur she's like just just like so different and so he's also into trading and like they're both like honorable students and like she was like we're gonna start a podcast like we're gonna talk about all these things and I'm like go for it do it and so my older daughter she was like I can't wait till I can get like my first like teen job and say she's like why are you waiting start now why she was like entrepreneur.

SPEAKER_03 41:01

Yeah if they ever want to be uh guests on this podcast with your uh approval or your consent let us know that might be love that that might be an interesting entry into the whole situation uh and we'd be glad to to mention them or lend them uh of our knowledge in terms of the podcast we've we've learned a lot this is this is super fascinating I again just the way you're describing you keep hitting these examples where you know these are common behaviors across kids and then the way you describe it with your daughter it's like oh that seems to hit that diagnostic trait and I really appreciate that because it's something we do spend a lot of time dissecting not just day-to-day business but here on the podcast is this idea that you know the idea that you find relief in the diagnosis because you finally know what it is and then I can interact with some parents who are gonna filter everything through that diagnostic labor it's like no I don't think that's I think that's just your 12 year old being a 12 year old and yes it might look different because their language is different or you know whatever the case may be I I don't know if I missed this but did your daughter end up then getting ABA services through another provider or was it just a lot of homeschooling ABA kind of stuff?

Culture, Dialect, And Fit In ABA

SPEAKER_00 42:13

Love this question because yes and no again she was in early starts really early and then she was in school and so in Louisiana they do like some they they'll like some schools will accommodate like a one to one aid in Louisiana from an educational perspective she doesn't meet the educational autism diagnosis. And so she meets the medical diagnosis and so a lot of families don't understand that from an IEP perspective that they're two different categories until she falls under other health impairments. And so she used to have like someone that would come to the home and provide services to her and to be candid and like for lack of a better word it was like a lady who was Caucasian. She didn't understand Sage Sage is very naturally like culturally black. That's the only way I can describe Sage my older daughter not so much you wouldn't think she grew up in a black household it's really odd. I don't know how this nurture virtuous nature played out here. But Sage is very culturally black and so sage would speak in Ibonics and oftentimes the lady would try to like correct her dialect correct these different things or like they would work on goals and the goals were very like removed from who she was and how I spoke to her and how dad spoke to her grandmother and so she would resist like understanding like how to do now like Sage can do that. She just doesn't want to say it in the way that you're wanting her to say it right like she says this for that word or she uses this for that. And she wasn't understanding she was like well this is standard English and so I had to be like well you're not the right fit for us right and so in Louisiana I think that they're even less right we know that the average is like right around six percent Of black BCBAs in general in Louisiana is way less. And it's a very conservative state. And so for me, the best decision that I've made, and there's a blog out there, if anyone wants to look it up, it was like AVA experience as a black mother that I wrote as a BCAVA about just like the cultural nuance surrounding just being a black mom and figuring out how to get a therapist that meets us where we're at, right? And center our lived experience. Like being black isn't a monolith, but we can also consider like what does it mean to kind of like outpour the dialect that's needed. And so for us, it was like, okay, this isn't working. And so a lot of it was heavy on just like me educating mom, educating her dad, right? Educating like other people of like how to help her. And then I do a lot of advocacy. And so a lot of the conferences that I speak at even now are like education-based conferences with like SPAD teachers. I mean, so DEC, division of early childhood and education, I'll speak at those conferences because I think that's where the meat is at in the city of New Orleans. And a lot of parents are not participants in the ABA conferences, unfortunately. And so there's more parents that go to those educational-based conferences than they do to ABA conferencing.

SPEAKER_02 45:09

That makes sense. Yeah, I have had a, I believe that's the article that we had that I had up here, the addressing health equity and ABA treatment part one, a black mother's experience. I found it all learned behavioral. Yeah, that was that was really interesting. Towards the end of that blog, you talked a little bit about code switching, I believe was the term that you used. Is that kind of what you were talking about in relationship to the quote unquote more proper English versus like more culturally relevant linguistics that your daughter would use for the area? Is that kind of what you were talking about? Or is that something a little bit different?

SPEAKER_00 45:43

So a little bit different. I think from an adolescent standpoint, I think cold switch cold switching isn't as like prevalent as it is for like a black person in a professional corporate setting.

SPEAKER_01 45:53

Okay.

SPEAKER_00 45:54

I think that as individuals learn to grow, you hear, right? Like you'll, you know, you hear different colloquialisms of like people saying, like, oh, you know, my mom and she talks on the phone, she's using her quote unquote white voice, right? Where as like when you're talking regular, you may not use that level of like standard English in your in your dialect. And so linguistically wise, I think that like Sage just like makes up different like colonialisms, or she'll like adopt different things from like just natural black Ebonics that she hears throughout the community, right? I'm in a very dense and rich black family. My mom is a child of 12, right? And so, like all of my cousins, all of the you know, people that she interact with, they're also speaking in Ebonics. And so that's natural for her. Any removing of that is a little bit more challenging. And so, like Sage is learning through like Junior Beta how to speak more eloquently, right? Or learn how to speak more to the standard English spike standards, right? But like at her core, that's not who she is. And so when I look at ABA, I'm not looking at ABA to shift her into that person. I'm looking for ABA to shift her into who she is in her everyday life, and in her everyday life, she speaks Ebonics.

SPEAKER_02 47:08

And that goes back to try to catch up. That goes back to because I I think maybe this opens up a whole new door because I definitely want to spend time talking about this because you're so passionate and you've done so much advocacy, kind of wrapping up what we were talking about a little earlier when we were talking about the Kubler Ross five stages of grief and acceptance. A few times you've said like the phrase, that's just who she is. And it seems like you've kind of accepted that this is my daughter, this is who she is, and I wouldn't necessarily change these things. And I just reflect back on some of the parent groups with parents with early diagnostic models, right? They their child gets diagnosed with autism, they're like, We gotta fix the autism, it's all about fixing it, it's all about getting rid of the the autism. That's that's their goal. And usually, almost always, at the end, they're like, they are who they are, let's just help them live the most independent and successful and happy life that that we can. But in the beginning, it's this fix-it model and this deficit-based

Identity Over Fixing Plus Sensory Safety

SPEAKER_02 48:04

model. So out of curiosity, if you could wave a magic wand right now and take away your daughter's diagnosis of autism, would you do it or not? And why or why not?

SPEAKER_00 48:22

That's a deep question, right? I think that like, would I take it away if I had a magic wine? Like, would be the thing that I would take away? I don't think I would take away anything. I think that if she was asked that same question, I think that Sage struggles with understanding like autism to be for some people a deficit. Like she's gonna, you know, if she accepts like to be a guest on the podcast, she's gonna explain it as a strength of hers. And so she doesn't see it as a poor thing or a bad thing, or if like someone says something and it's like has like a negative connotation on it. She's like, What you mean by that? Right. And so like she's gonna be like, This is who she is. And I think that every one of her like DSM5 criteria checks, like make her who she is. Like, I don't think I would change anything. And I say that to say that like at one point we thought that like, so she was taking medicine to like sleep and regulate her sleep patterns, but I also tried like ADHD medicines at one point, and I felt like I was like losing her personality or like things that like would like really tick me off. Like, I have a spiral staircase in my house, and she would like flip on it and it would like crack like I would make me cringe, but that was her way of like giving that, like getting that like stem and that like was the right word, just like the input sensory diet piece, right? That sensory input. And so, like for me, like I on one hand, I was like, I think she needs this, but on the other hand, like this is like super unsafe. And so that's why we chose gymnastics as a sport, right? And so I think for me, I always tried to figure out okay, this is something that she's experiencing. How can we shape life as is today to meet her where she's at? And so I don't think I would wave a magic wand any race for anything. Maybe like she this is one. So like she has like sensory regulation problems where like she doesn't experience pain the same way we experience pain.

SPEAKER_03 50:26

That's interesting.

SPEAKER_00 50:26

I think I would take that away. Like, there was times where she would like break like eye, like a bone or like have like injury, and I had no clue for like weeks, still to this day. Like, she doesn't always like talk about like the pain that she experiences. And like she used to take or she'll run her bathwater and it will be like scorching hot and we'll be like, you can't get in there. And she's like, Why? And so, like, moments like that where like she doesn't understand what pain is because her like pain regulation isn't as sensitive. That may be the only thing that I would take away because like she was in gymnastics and she had like a growth plate injury for like weeks, and then even after the girl had like a cast on was like, stop doing that. Like she would still like put pressure on the item, like on her her arm. And I was like, You have to stop doing that, you won't be able to compete, right? And so, like, we had to like, even like when she was doing conditioning, she would be like trying to do other things, but like, you can't condition that part of your body, you have to focus on the areas that are not injured, and so that probably is the only thing.

SPEAKER_02 51:25

Thank you for sharing. I think that's a really important message for parents to hear that maybe just got the diagnosis or aren't sure what to do, and they're like, you know, I'm gonna put this in quotes. Is my child broken? Do I need to fix my child? What's this diagnosis mean? Like what she said was, I think, really important message for a lot of parents to hear. So thank you for sharing that. That's that was awesome.

SPEAKER_03 51:45

Yeah, this uh that that high uh pain threshold is is fascinating whenever I encounter that with clients. And I liked your example with the spiral staircase. A lot of times, I think erroneously, as behavior professionals, is the idea of we're gonna stop that behavior, and then you put it best, which is how are we going to allow for said behaviors that are similar, functional equivalents, if you will, in a way that maybe reduces the rolling down the spiral staircase, or at least as a parent, you can feel that she's become more proficient at doing that, so she might be less injured, right? Um, I've got a kiddo right now who's a climber, and it's like, yeah, I mean, it's for me, it's natural, we gotta take him climbing wherever we can go climb. And then he always finds that extra height, that extra, you know, barrier to break where I know that somebody's gonna come over at the play space and say, No, he's gotta come down from there. And that's that I think that's for him. That's the diagnostic piece that I see is he's a climber, he's a young boy, and then you know, somewhere he just wants to push that threshold, that limit, and then that's where I can come in and set those boundaries, knowing that you still want to climb that high, but I can't let you do that. I have to let you, I have to make you come do it over here, and then I can feel good about you know the the the the limit setting versus some sort of authoritarian block. No, you're not allowed to do that. I think that's a really important difference.

When ABA Becomes Harmful

SPEAKER_03 53:03

So I guess kind of shifting gears, you've you've got a really rich experience as a parent, and then I know that that's translated well into your professional career. We talked a little bit about the ABA services not working so well for your daughter, maybe based on the person that was delivering, and then if you go onto many online communities, you can find many neurodivergent individuals now talking about how ABA has wronged them. What give us your general impression about all that, knowing that you kind of have experience on both sides of this? I know actually this podcast was birthed out of that very discussion seven years ago now, and saying, hey, we've we're getting some harsh criticism, and it's easy for us to dispel that criticism, but then you listen to it, and inevitably you have to go, yeah, yeah, they're right. Yep, that stuff happens. Yep, they did that, yep, this person did that. And it's all a lot of it's back to this idea of fixing or shaping something into this exact developmental trajectory toward a specific milestone, which we kind of talked about before. What what's your general impression on all that? Maybe you experienced a little bit of that as a parent, and then you've certainly, I'm sure, encountered the debate as a professional. Where do we land on that? We've certainly gotten some things wrong. What are those? How do we make it better?

SPEAKER_00 54:24

Yeah, I think my experience was actually as a clinician. I think that I witnessed a couple of different agencies where I would say ABA abuse was occurring, right? I think that like I was a clinician that was, in a sense, a whistleblower of like, let me figure out like on the ethics hotline, like how to like figure out how to like remedy this or how to go to the the clinical director and say, hey, this is a concern.

SPEAKER_02 54:49

And I'm so what were some of those things? We don't have to call it the agencies, but what were some of the things you saw that you were not okay with?

SPEAKER_00 54:56

Yeah, like there was one, two, maybe three in different instances that made me be like, whoa. So without giving away that agency, I was a BCBA there probably like three months, and I was like, I can't keep working here. Like, absolutely not. I think I was like so stressed out, I was telling my husband, like, we're gonna lose income until I figure out something else because like I can't keep doing this. Like it was great.

SPEAKER_03 55:28

Yeah, I might unfortunately the only answer is to leave because we're it's it's probably very unlikely that you're gonna change that whole culture that's already making money. And it's I mean, that train is rolling, right? So yeah, your only choice in a lot of those situations is I can't, I gotta go. I can't be doing it.

SPEAKER_02 55:43

And then you gotta do it. We didn't realize that sometimes to do it the way you want to do it, you gotta start it your own company. But go ahead.

SPEAKER_00 55:49

Yeah, yeah. And so golden handcuffs are real for those who feel they need to stay within those organizations. Um, there's always another one out there. Trust me, these CDAs are wanted. But like the child in in particular, she was engaging in severe self-injurious behaviors upwards to a count and frequency of 200 per day. Oh wow. I was like, what are you doing to stop this behavior? And it was like, we try everything. She honestly aged out of this program. She just is very petite, and we keep her here because like the parents want some level of support. And I was like, Yeah, but they're also not here and they don't see what's happening with their child, and she's body slamming over a hundred times a day. Like, you need to get her help, right? And it was just like devastating. I think at the time the C D was overwhelmed. She talked about how she acquired that clinic in her first year of being a VCBA. And I think that the owners had complete trust in her ability to potentially, you know, help these kids. And that was a child that I think they really, really did a disservice to. And there was another child within that same clinic who was engaging in severe behaviors to the point where they isolated him the entire time he was in that facility. They was very careful about like pushing him to do other tasks. And so doing like a variation of SBT, not true SBT. And so really just doing another disservice, right? And so, like all of these things was just like cringing to me. A person who was like having research papers all over my living room. There was one child they were doing toilet training on. It was doing like the old Fox and Risen like type of method, and they were calling it like potty jail. They had like tarp on the floor, child with like no dignity, just in her undies with all of the other kids, just like locked away from all other activities for the entire duration she entered that clinic, right? And so things like that where they were doing like extreme positive practice for hours on end was like devastating to me, right? And so, like, I was like, oh my god, like how do I help this? I put in notice, I explained why. And obviously, this is a clinic that was already corrupt and unethical. They fired me instead of letting me finish out my feeling you were gonna end up with getting fired on that one. I yeah, yeah, yeah, unfortunately. And so it was just devastating. And I think like the BCBAs before I entered that space was like so oblivious. They thought that like this was the way because we talk about like what is in-house breeding of BCBAs look like, and I gotta think that that's another layer of like where we need like a cult study on like the ABA, because like you have this individual who has this grandiose mindset of like I'm the BCBA and I'm gonna teach these individuals how to implement this ABA therapy, right? And they're teaching their way of ABA. There isn't a regulatory company that's coming in and saying, is ABA right here? Right. And so the RBT learns the corrupt way, they then become the BCBA who teaches that corrupt way, and it's just like this tier level of a cycle of individuals that only know that way and that method. And yeah, they may pass the BCBA because everyone teaches you the task list items, but they don't fully understand the science. And so there is this behavioral loop where, in a sense, like when we study like what a cult is and what that practice looks like, I think it's scary for a BCBA to only learn under one BCBA in one agency.

Part One Closing

SPEAKER_03 59:27

And that's a great point, Asia. To close part one of our interview, please do return for part two and always analyze responsibly. ABA on tap is recorded live and unfiltered. We're done for today. You don't have to go home, but you can't stay here. See you next time.