104: The Controversy of ABA: A Discussion with Researcher Dr. Robin Roscigno

Our deep dive into ABA and autism continues in this episode. Today’s guest recently finished her Ph.D. in Education, focusing on disability studies and related research in the world of DEI. Dr. Robin Roscigno helps educate parents about neurodiversity to create a more inclusive world for neurodiverse individuals. She posts frequently on social media platforms about autism and autism therapies. Her studies and life experiences give her both a professional and personal relationship to this topic because of her brother’s childhood diagnosis of autism. Robin was also diagnosed with autism along with her young daughter and began navigating the therapy world as a parent who struggled to find therapies that are affirming. After leaving teaching to pursue her Ph.D., she now focuses on autism intervention and challenging the dominant paradigms.

Show Highlights:

Understanding what ABA therapy is and why there is such controversy around this topic
The dilemma for parents in the “explosive landscape” of ABA
Understanding behaviorism as a therapeutic approach
The old-school ABA therapy and its focus on eye contact
How current autism therapies are designed to make people appear “less autistic” and “fit in more” in the world
The need for wisdom and a harm-reduction approach in therapies
Choosing a school program for your child based on goals and techniques and not a binary (ABA:good or ABA: bad) approach
The foundation of neurotypical norms (like eye contact) in connection, relationships, and social referencing—-which we ALL need
Teaching social referencing in affirming ways that help develop skills
Looking for red/green flags in assessing specific goals and techniques from an advocacy perspective
Unrealistic expectations of autistic kids and their parents

Resources and Links:

Connect with Dr. Robin Roscigno: Website, TikTok, LinkedIn, Instagram, and TEDx Talk: “Your Autistic Child Can Have a Great Life. Here’s How”
Connect with KC: Website, TikTok, Instagram, and Facebook

Get KC’s book, How to House While Drowning

We love the sponsors that make this show possible! You can always find all the special deals and codes for all our current sponsors on our website: www.strugglecare.com/promo-codes.

KC 0:00
Hi Robin, thank you for being here. I've got Robin Rossignol here in the studio with me, and why don't you just introduce yourself and tell us what your area of study is?
Dr. Robin Roscigno 0:15
Sure. Hi, everyone. My name is Robin Ristic. No, I do a number of things. I just finished my PhD in education theory, organization and policy, do disability studies related research around disability equity and inclusion. And I am on various social media platforms, educating parents about neurodiversity, and helping to kind of create a more inclusive world for neurodivergent people.
KC 0:41
So you're very close to us being able to call you doctor.
Dr. Robin Roscigno 0:44
You can actually call me Doctor I just defended. Oh my gosh, okay.
KC 0:48
record scratch. Hello, I have Dr. Robin Rossignol in the studio today. Incredible. Well, Robin, congratulations. That's really cool. You and I connected over tick tock because you were posting a lot about autism. And I really wanted to talk to you today about autism and autism therapies, and just some questions that I have as a mom, and that I know other people have as well. So first of all, can you that's kind of your professional relationship to this topic. Do you mind sharing your personal relationship to this topic? Sure.
Dr. Robin Roscigno 1:25
Yeah. So I mean, I started as a special education teacher years ago, my brother was diagnosed with autism when I was a child. And I went into that kind of with that as my frame of reference. And my mom was a big floor time person, dir floor time, which is a kind of play based therapy for autism and was very critical of other therapies at the time. So I had this kind of frame of reference, became a special education teacher. And then I saw some things that were shocking to me, honestly, because I just didn't grow up around that type of treatment or therapy. I'm very rigid kind of rope, strict therapy kind of approach. So I kind of worked in special education. For a while then I myself was diagnosed with autism, right around the same time as my daughter, they did a twofer first. And which happens a lot actually, because you know, sitting in all these doctor's appointments like I do that, I do that too. She was diagnosed. And then I started kind of navigating the therapy world as a parent, and was really struggling to find therapy that I felt was affirming to my child's kind of individual ways of being. And so that prompted me to leave teaching actually to pursue my PhD and I focused specifically on autism intervention, the history of autism intervention, and kind of challenging some of the dominant paradigms that we use to think about intervention. And that's kind of where I am now just finishing up with that.
KC 2:48
So I have a daughter that's autistic as well. And my experience was immediately upon diagnosis. The first therapy that was recommended to me was ABA, which is applied behavioral analysis. And interestingly enough, because I had been on Tik Tok and listening to autistic advocates, I had heard people be really critical of ABA as a therapy. And yet it was the first thing recommended to me and spoken really highly of by the pediatrician by the developmental psychologist. So I remember being kind of confused, because that was like, being presented as definitely what you know, we all need to be doing. But then I was also hearing criticism. Turns out there's actually some controversy around ABA. And I'm wondering if for the people listening that maybe don't know anything about this. If we could first talk a little bit about what ABA therapy is, and then maybe you can help give a synopsis of like, what the current controversy is around ABA.
Dr. Robin Roscigno 3:46
Sure, yeah. So actually, my dissertation is about the autism wars and kind of parents position in that. So really the controversy so ABA therapy, broadly speaking, for autism is the application of behaviorism to treatment of autism. So it's using contingent Rhian rewards and punishments, right consequences to manipulate behavior. And in the context of therapy for autism, we're doing that to kind of reduce visible kind of signs of autism. Right? The problem is right is on the experience side of it, the people experiencing the therapy is that those things don't really go away. We're just learning kind of, and being incentivized right, to suppress them to do them less to do it less visibly to do it differently to act this way, as opposed to this way. And so what's happened is that many, many people who have experienced this form of therapy or this approach to therapy had very negative experiences on the kind of internal sense and one of the limitations of behaviorism is it studies observable behavior, it doesn't study internal experiences. So there isn't really a lot of data about what it's like for the person experiencing this therapy and it's deemed if Effective, right? Because we see, you know, Johnny's flapped his hands 30 times yesterday and he did 20. Today. Effective, right. But we're not actually studying what that's doing right to Johnny on the inside. And so that's kind of the controversy now, it's become very kind of heated. And there's a bit a lot of misconceptions really on both sides. I think that, you know, on the kind of artistic side, there's a lot of kind of rhetoric around that ABA was created specifically to normalize autistic people. That's not exactly true. They were really interested in normalizing kind of everybody in the beginning, LGBTQ conversion therapy kind of treatment for addiction at risk youth, there's a lot of kind of areas, it just turned out that over time, autism came really the most lucrative, so they kind of moved into that arena on the parents side, right is the parents are really in the middle, as you said, right? Being told on one side, right by doctors, that it's the most evidence based treatment for autism, if you don't do it, your child won't have a future, right. And then on the other side, if they even consider it, their child abusers. And so it puts parents in a really tough spot because they want to do right by their kids. And they're getting such conflicting information, and yet have to navigate a system that's heavily rooted in behaviorism. Right? So how do we do that, and that's really where my work comes in, is trying to help parents navigate this very complicated, and really explosive landscape, right, which is, can be very, very hard, especially for parents that are new to this right, that are walking into like a 15 year public visible, dragged out, smack down fight, and are just like, I just want my kid to get some help. Why are you yelling at me? So that's kind of where I come in, I guess.
KC 6:39
So for someone listening that maybe has never heard about some of these terms? How would you describe behaviorism as a therapeutic approach?
Dr. Robin Roscigno 6:48
Okay, so behaviorism starts with kind of observing somebody, right, and then saying, I want to change x behavior. There's a lot of kind of technical jargon around it, right. But really, the idea is that all behaviors have a purpose, right? And their estimation, that's really boils down to like four of them, escape attention, tangible, and then automatic or sensory, it feels good to do it, right. And then they use kind of rewards and consequences to manipulate that behavior. So let's say someone is, you know, calling out to get the teachers attention, right, a behaviorist may say, we want to reduce the number of times that so and so calls out in class. And so what the teacher is going to do is ignore the calling out, and then only pay attention to that child when they elicit the desired response of raising their hand, right. And so it's kind of uses that science right of operant conditioning to increase the amount of times that so and so does this desired behavior. So it's really using kind of those techniques to reduce or increase particular behaviors, but basically, using rewards and consequences to do it, as opposed to other approaches that may work kind of more developmentally, are kind of involve more internal processes.
KC 8:06
So it makes me think of like star charts, because I'm trying to think of like examples that don't have anything to do with autism that might help people understand, like, if I have a child that, you know, you mentioned, like maybe they're calling out in class without raising their hand, and they're supposed to be raising their hand. And one way that you're describing is like, the teacher might just not respond to that child so that they kind of get the message like, Oh, this is not the behavior that is like acceptable in this context. And so if I want to get what I'm looking for, I have to change my behavior. And then there's like this aspect of the star chart, right, which is like every time Johnny raises his hand, maybe he gets like a star on his chart. Yep, exactly.
Dr. Robin Roscigno 8:49
Right. So we're going to reward the desire behavior, ignore the ones that we don't want to say the problem is, right, is that it sounds good in theory, right. But we don't know why this particular child is raising their hand is calling out so much, right? They may have an impulse control issue, right? They may have, you know, not be getting a lot of attention at home, they might have kind of attachment issues, they may have trauma, right? They may be struggling with the academic work, right, and trying to get help and not knowing like the right way to go about it. And so when we kind of just focus on Well, they did it this many times, and now they did it less, we miss opportunities for really deep skill development. And it becomes a bit of a band aid, I guess. Yeah.
KC 9:31
So I was gonna say you're saying that the risk of behaviorism is that we fix the behavior without addressing like the underlying problem or issue or need. I'm curious, would you say that there are any instances where behaviorism is okay, or helpful or not harmful?
Dr. Robin Roscigno 9:50
So it's tricky, right? Because if you criticize anything about behaviorism, right, that kind of response as well. We all do. Behaviorism all the time. Right? Right, that's how our world works is, you know what you go to work without a paycheck. And there is an element of that that's true, right is that we do have kind of naturally occurring rewards and consequences in our daily lives. Right. So we can't actually avoid behaviorism entirely. I think the issue with ABA therapy is it's a very concentrated, constant, specific, intentional application to a very niche group of people only long periods of time, right. So we have kids that are getting 40 hours a week of intensive behavioral therapy, where are these kinds of rewards and consequences are intentionally manipulated all the time? Right. So as opposed to a kind of naturally occurring consequence, right? So we can't say that we can never ever do behaviorism right? I do. You know, I do a behaviorism. All the time. I say, if you get in the car, we'll put your favorite song on. Alright, that's behaviorism.
KC 10:57
Yeah. And I'm thinking about my, like, my kids have had speech therapy before. And especially when they were really young, they often had this sense of like, okay, here's the Mr. Potatohead toy. And like, for every word that you repeat to me, you get like another little, like, hand, or here's the whatever. And it really like would motivate my girls to want because like, there would be three and like, no three year old wants to like repeat words to learn pronunciation with speech therapy, but they'd get really excited to like, it's almost like they enjoyed the game of it. Like I say the word, I get the potato head piece, I say the word I get the potato head piece. And so in that context, like it happened once a week, it was you don't know, I'm trying to like, kind of, like, put that into perspective of like, where, like, is it? Anytime I see behaviorism? I should be like, Oh, my God, we're peppering over behavior? Or is it specific to like what you said? Like, there's not like an underlying need for like, why my child, you know, has a hard time pronouncing her B's. So we're not necessarily like papering over something. Yes.
Dr. Robin Roscigno 12:03
So I think one, I always tell parents, you will know if it is bad, it's not subtle. When therapy is going bad, it's bad. It's they're crying, they don't want to go. Right, they shut down, it will not be a surprise to you. I think there's this kind of narrative, especially among, you know, like, kind of autistic people on the internet is that, you know, parents can be abusing their kids and not know, and I think in some cases, maybe, but in most cases, if therapy is truly distressing, your child, you'll have some sense of it right? In that case, right? When I would say it would be bad would be, let's say that she can't say it. She doesn't say it, right? And she says, Oh, well, I'll just wait. No Potatohead for you, right child gets more and more frustrated, and angry. And she says, Well, next time you can turn behind a potato head, and then just holds the piece of the potato head in front of her face, right? While she cries and screams. And I've seen this in therapy hundreds of times, right? If we're using something as an incentive, what happens when they don't earn it? And so we have to kind of, if we're following a kind of strict behavior analytic protocol, we're really not supposed to give it to her unless she does the desired response. Right. So what happens? And so that's kind of what we're talking about. It's not all behaviorism, you it's really impossible to do any kind of teaching or therapy that has no behaviorism. In it, I really don't know what that would even look like because anyone could look at any teaching and say that's some behaviorism when you praise someone, right, that's social reinforcement. But I think what we're talking about is the more kind of crueler applications of it, and not kind of just like bringing in other things like relationship like self advocacy, understanding, trauma informed types of approaches, right? When we only do behaviorism, if you do this, you get this, right, then we kind of miss how we could be supporting kids in the kind of broader, deeper ways. Whenever
KC 14:01
I hear people talk about ABA, you know, I've never experienced ABA, but whenever I hear people describe behaviorism, and some of the risks with behaviorism, I'm always taken aback to my experience going through teen rehab, because they had this approach called therapeutic community. And it was like heavily in fact, the entire thing was just, you know, you came in, you're a level one. And you had to do certain behaviors and complete certain assignments to get to a different level to get these three privileges. And then if you did a behavior they didn't want you could be knocked down a level. And you know, it was literally everything from you know, how you cleaned your room, to how you shared in group to how you dress like if you there were a lot of rules. And if you broke the rules, you got privileges taken away or you got consequences. And then if you follow the rules, they would slowly add in more and more incentives more and more rewards more and more praise you And, you know, the idea was like, let's take these young girls who are having mental health issues having addictions and like, Let's form them into different people that don't have those issues. And what happened was this really bizarre experience where, like, I can't say that nothing good came from it, like I did learn a lot. There was some other therapy there. But there was also a very bizarre trauma that I feel like I experienced, because like you said, there were a lot of behaviors that got extinguished. But the like, the reason those behaviors were happening, wasn't ever addressed.
Dr. Robin Roscigno 15:42
Right? It's kind of like an addiction treatment, right is you can, you know, kind of get someone to stop drinking, if you'd hide all the alcohol, right? And put them in a program where there's no alcohol. But did we kind of address the trauma that makes them want to drink all the time? Right? Did we get to the kind of root cause of these things? Did we give them tools that they can use to, you know, navigate the world? Maybe not? Right? And so what happens is when we take away that oftentimes, a lot of those behaviors come back. Because when we're kind of taking away the carrot and the stick, what did we actually learn? Right? And we didn't fix the kind of root cause of them. I have, you know, an example I use a lot, is it a student in my class, and it's my student was living in a shelter, right? Was Was housing insecure, and had very little things, right. And so another student touched his hat, and he punched him square in the face. And, you know, a behavior analytic approach would say, what was the antecedent someone took his hat? What was the behavior? He punched? Someone? What should be the consequence? Right? He should apologize. He should, you know, not be able to play at recess, whatever it was, right. The reason he punched him, because he took the hat is because he lives in a shelter, right? And he only has a few things, and people steal his stuff all the time. It's coming from a deep seated, very significant trauma, right? And so we can get him to stop punching people. Sure, right, I could, you know, give him a consequence and say, you can't you have no recess for the week. And maybe you wouldn't punch someone again in my class, but we're not dealing with the kind of emotional reasons for it, those are not being addressed. And so it's going to come out in a different way. Same way, when people stop drinking, and they don't actually deal with the root, the kind of emotional pain, they become addicted to exercise, addicted to social media, right? It's we're not actually getting at the root, we're just kind of, you know, stopping one particular behavior, and then it kind of morphs, right, and then we have different problems. So it's really, I think, a missed opportunity. When we only focus on what's observable, we miss so much of what's true for people's experiences for children's experiences. Um, that's really my critique. Yeah.
KC 17:45
So if somebody's listening, and they don't know anybody autistic, they've never seen ABA therapy, like, what kinds of things do you see in ABA therapy? And like, what is the goal of ABA therapy?
Dr. Robin Roscigno 17:55
So I mean, there's kind of like old school ABA therapy, and there's some people still practicing like that, where it's very, they call it a discrete trial, right? Where I sit across from the child, and I say, I give them a direction, they either do it or they don't do it. And then if they don't do it, I kind of guide them. By me either picking up their hands and having them select the right answer, or, you know, reducing options until they get the right answer, then they get the right answer. I give them some reinforcement, I say, Great job, here's the sticker. Great job. Here's a gummy bear. And we just keep doing it like that, right? I'm gonna have to like train it. So that's one way. And
KC 18:28
what kind of things would you be trying to get them to say or do you
Dr. Robin Roscigno 18:32
know, sometimes it's around kind of social skills. Sometimes it's like, you know, eye contact using particular phrases. Sometimes it is learning actual skills, colors, shapes, numbers, those kinds of things. Sometimes it is selecting a, you know, particular social skill or using a social skill. It's all different kinds of things, that it could be a lot of ABA, things focus on reducing things that look autistic. So things like stimming, hand flapping, vocal stimming dheireadh IPI, which is what they call a kind of, you know, that's what they call stimming, echolalia, repeating certain words. So I've seen behavior plans that are for every 10 seconds, that so and so doesn't script echolalia, and then they'll get a reward for that. So sometimes it's about reducing those things. I can't say it's all the time that is that. So that's what I tell parents a lot to look out for is what is the goal? And what is the technique we're using to get there? I think the biggest problem is when we have bad techniques and bad goals. The more subtle, right is when we have good techniques and bad goals, or we have bad techniques and good goals. And really we want to be in that kind of good techniques and good goals, area, goals that are affirming and supportive to the child and techniques that are gentle and, you know, inclusive and fun and flexible. And I think you know if you can find something that's ABA that does that, I don't see. It's not always a problem. So
KC 19:59
let's talk about it. Eye contact in particular, because that's what I hear a lot about when people talk about ABA therapy, I guess old school ABA therapy used to focus on eye contact, requiring eye contact, encouraging eye contact, and getting children to basically respond more by making eye contact. And that same like, you know, when you make eye contact, you're gonna get a Skittle or you're gonna get one thing that I saw a lot is that if a child has like a favorite toy, whether it's their iPad, or like a lovey, like taking that away from them, and then being like, you get it back, when you make eye contact,
Dr. Robin Roscigno 20:35
one of the things they do right is they'll have a parents do what's called a reinforcement inventory, which they'll have them. I don't know if you had to do one, but we used to have parents do it all the time. And I see them a lot. It's a kind of checklist of what is your child? Like? What's motivating to them? They like game, so they like songs? Do they like Peppa Pig? Do they like whatever, and then you use that as the reward. But oftentimes, they don't want them having access to that other times because it reduces its power. Right? So if I can have my iPad, when I leave therapy, that I'm not going to work that hard for the iPad in therapy, right? So the logic is that if you take it away, or reduce access to it to only specific times, then it raises the importance of that item, which is particularly cruel, right? Because then we have kids who are very attached to certain things that now have to perform these desired behaviors to gain access to them. And oftentimes those behaviors are antithetical to what their disability, you know, allows them to do. Imagine, like, Hey, see, you can only have chocolate if you do brain surgery. Sorry. Right. Like, and you would be like I say, Well, I guess you just don't want to do that. Maybe try harder. Right? And I only allowed you to have that right? All right, only allowed like and people do they do it with affection, even right? We're only hugging them when they do what we want, right? Imagine if like your partner could only hug you if you were a good wife that day. Right? It's terrible. Not to say that all people that do ABA are doing this, but there are some that are. And that's one of the things I kind of have parents look out for is are we using a child's you know, sacred items as behavioral incentives. And I think that veers into a kind of cruelty that I can't support.
KC 22:24
One of the things that I have sort of observed as I've looked at this landscape, because I don't know when ABA started becoming really controversial, or like when people began kind of speaking out in mass against ABA. But I think people forget that the first person to ever be diagnosed with autism is still alive. Right. And so like the first generation of people that had to, quote unquote, address, autism, were parents that suddenly we have this diagnosis, and we were identifying these children, and they're autistic. And so you know, it was parents having to and I think at the beginning, the diagnosis of autism was really only being afforded to people that were clearly and visibly and obviously, autistic by a certain sort of set of criteria. And so that often included nonverbal children that weren't saying, Oh, it's so distressing when you take my thing away. And I'm not really alert, right? Like, I mean, children don't say that in general, right. And so you have these parents who love their child, and want their child to have a good life, for the most part, I think. And there's this therapy that seems to be making them less autistic, right? Like, oh, she's making more eye contact. She's not flapping her hands as much. And I think also, and we'll get into this, but like, autism is not all hand flapping. Like some people stem by banging their head against the wall, right? Like some people stem by biting. We have these meltdowns where we can't do anything for hours. And so parents are seeing these things that are distressing to their kids and going ABA therapy is making these distressing behaviors, less obvious, right? And then all those children grew up. And for the first time, we're hearing the generation that went through this kind of old school ABA. And I remember hearing autistic adults who had gone through ABA, talk about their experience and say things I remember one girl in particular, saying, like, I've been seeing my therapist, because I'm really trying to, like implement some different like habits for my mental health, and I can't seem to sustain anything. And I really want to journal but I can't journal and she said, I saw my therapist today. And we had a breakthrough. And I realized that because so many of my formative years were spent with 40 hours a week in ABA therapy. When I did what they wanted. I got something I wanted, that I now don't have the ability to have like intrinsic motivation for something like I only feel I can't create my own structure. And people talking about, you know, the reason that I don't make eye contact is because it's painful to make eye contact, and I can't focus when I'm making eye contact. And if I'm looking at you in the face, I'm taking in every detail of your face, and I can't hear what you're saying. And so you're forcing me to look you in the eyes, it's painful for me. And then I'm being reprimanded because I'm not responding correctly, because I can't understand the question. And so it was like, we didn't recognize that there was a reason why autistic children were doing the things they were doing.
Dr. Robin Roscigno 25:43
Yeah, I mean, I think autism is always filtered through the lens of deficit and pathology, right, is everything that autistic people do is wrong. And so a lot of those therapies right are the focus is on kind of identifying the things that are different about autistic people and making them not big. And, you know, a lot of the rationale right is that we're helping these children fit in to the world. In some ways, that's true. But I think, you know, we can dream of a better world, right? And we can create a better world for our kids, by empowering our kids to advocate for themselves, and to not be so controlled right in those very specific ways, and to kind of be more kind of CO creators with us. Now, I, to your point, there are kids who have really significant severe behaviors, right? We can't say that we never have to intervene. I got dragged all over the internet, because I said kids have to brush their teeth, that's not negotiable. And people said, Well, what if it's sensor really uncomfortable for me? And I said, well, is dental surgery less so really overwhelming for you, because when you don't brush your kid's teeth, you know what happens? They put them under anesthesia, and they have to get done to work, which is much worse. And so there are times when we do have to intervene in behaviors. And some of the tools available that are kind of rooted in behavior are effective in a short term capacity, right? But it's not all the time. It's not everything. It's not 40 hours a week, it's a kind of supplement to deep relationship building and kind of skill building work that happens on a kind of relational basis. Does that make sense?
KC 27:17
Yeah, it almost seems like there's also it's also just like an issue of triage. Like, I think sometimes when I hear people speak out against ABA, I often hear autistic adults with like, low support needs. And like, you know, they're talking about like, hey, you know, being forced to make eye contact or being told I can't flat my hands like stems and behaviors that really aren't hurting anyone. And I think we would mostly agree like, yeah, like, if it's not hurting anyone, there's no need to have this heavy hand of like, we need to extinguish this behavior. But then you hear parents of children who are autistic that are severely disabled. And I don't say severely autistic, like, there's no such thing as severely or mildly autistic, like it's all autism. But you could certainly be more or less disabled in the way that it hinders your daily functioning in the way you interact with the world. And so then there's these parents going, okay, but my child isn't just like not making eye contact and flapping their hands, they're getting up in the middle the night and running out the front door into the street, they are banging their wrists on the table until they have bruises and bleeding, they are picking out their cuticles, they are you know, if I try to make them brush their teeth, we have a three hour meltdown. And, you know, it does seem like there's a triage component to this where we have to keep people safe.
Dr. Robin Roscigno 28:42
Yes. And so I help parents a lot navigate the system, right? Because right now, the only therapy that's covered for insurance by insurance for autism is ABA. And they can get a lot of hours, they can get up to 40 hours a week. And a lot of people are using that as like a kind of off label one to one assistant. And they need the extra pair of hands, because that's the only way their family is functioning, no judgement, right? What I do is say, Okay, let's look at your behavior plan. What are the goals? How are we getting there? How is your child being supported in other ways? How can we supplement that with other kind of approaches? I'm never going to scream at a parent for trying to get their kid help. Right? And a lot of people you're right, right, that are saying, you know, never, ever, ever, you know, just let your kids run free. Okay, well, like sometimes people have to go to work. That's a very kind of, you know, privilege take because not everyone can homeschool their kid. You know, people have to go to work. People have to go in the community. So I've seen kids who have stems that are popping their eyeballs out of their eye sockets, gnawing absolute gashes into their arms that then become like infected and they become septic right? So there are times right where we have to use the resources that are available to us. And if that is ABA therapy, you're not a bad parent for going that route. My own child has been you No ABA therapy, I had a heavy, heavy, heavy hand and what the behavior plan was, there are certain techniques that I said no to I won't have or do extinction plans, for example. But there are that is what is available to a lot to most parents. And so I've always had a kind of harm reduction approach to that, as opposed to never ever ever do ABA. Because what does it mean to do ABA, there's ABA in every other therapy too. So it's not like oh, only do speech therapy, some of these speech therapists are just as bad so and some of these behaviorist and newer ones are really trying to change it. So it's got to be, you need to know who your kid is working with. Do you trust that therapist, not the industry of ABA? Not every ABA ever, not the ABA that someone on the internet went through? What's happening in your home? Do you feel okay with it? Do you have enough knowledge to actually look at a behavior plan and say, yes, no, yes, no. And that's, I think, where we can make some real change as opposed to kind of just screaming at parents on the internet, like not to put their kids in ABA, when many parents don't have a choice, particularly when we're talking about, you know, black and brown parents who are getting typhus called on them for educational neglect for not doing ABA. Right, or their kids are in really, you know, serious physical danger if they do some of those behaviors around a police officer, right. So we really have to have a kind of nuanced intersectional way of thinking about this, as opposed to these kind of, you know, binaries of good parents don't do ABA and bad parents do ABA, it's a little bit more complicated than that.
KC 31:32
One of the things that I ran into was that when I started looking at schools, I found that the schools that were just like nice little private preschools and things like that, like they are so afraid of the word autism, that I was being told left and right, like, oh, not a good fit, not a good fit. I had someone call and say we can't take her because she has autism, and they've never even met my child. And I'm looking and I'm looking, and I'm looking, and even the places that were like, oh, yeah, you know, we would definitely accept her. And then I go in, and it's like, it's a class of 27, three year olds, with two teachers, nobody, the atmosphere itself was not going to be able to meet my child's needs, they weren't going to be able to give her individual attention, they weren't going to be able to give her physical affection, they weren't going to be able to, you know, like, some autistic kids are hypersensitive, emotionally, and some of them are shut down and get real quiet. And some of them, you know, might get overwhelmed and freak out and fall on the floor. And it was like, Okay, I'm looking at these like environments. And the ones that I think might be a good fit won't take her. The ones that will take her are not a good invite, like they would be traumatizing in and of themselves. And as I go down the list of like trying to find her a place. The only places that were willing and set up to offer accommodations were the places that were like quote unquote, disability schools or special needs programs, and most of them if not all of them were ABA based. And I remember thinking like, I remember just like coming home and crying because like I was so dead set on like, we will never use ABA because I have heard autistic person after autistic person talk about traumatizing it was and I don't want to traumatize my child. And I myself went through a very conflicting experience with behaviorism, where it's like, okay, on the one hand, like I was using cocaine at 15 years old, like I could have died multiple times, like, there were some triage that needed to happen, there were some behaviors that needed to be extinguished, that we could not wait around for some five year relationship therapeutically to develop, right, like I needed to be contained things needed to be extinguished. But the behaviorism went so far, that it ended up also causing damage. And so I'm sitting here going, Okay, well, how do I navigate a system that is like deeply ablest? And the people who are saying, like, we are getting trained in disability, we understand autism, some of them have such an old school view of autism. And it really is difficult as a parent to go in and go, Okay. And then what I realized was because I had heard so many people say, Never ABA, never ABA, ABA is abuse. I realized that I didn't even understand what ABA was behind like, it makes them conform. And so I would go into places and they would say, Oh, we're not ABA, and then they'd be doing things that basically were ABA. And then there were other, you know, daycares or centers that would say like, Oh, we're an ABA center, and you'd go in, but they weren't really doing what I understood to be a VA and so you can't like go off of the term anymore. You That's what I
Dr. Robin Roscigno 35:00
tell parents to do. And I know like, there's people that will tell you, Oh, if it's called ABA, it's bad. If it's not called ABA, it's good. But without really identifying what those practices are and what the problem is. And so what happens is, is that they, you know, aren't in ABA or not ABA, but they go to a school and the whole school is ABA. They just don't realize it, right? It's rooted in behavior, analytic principles. There are other school that's not ABA, but it's not called that. So it's okay. I really think we need to kind of get out of the mindset of like, the labels are accurate, because they're not always accurate. My daughter went to an ABA preschool too, because her public school wouldn't take her she was, you know, half a point shy of the threshold for preschool. But I gotten kicked out of her general education, preschool for like kicking kids in the circle. So I didn't know what to do. I was working, I was like, What am I going to do, and I was working for this agency that did some ABA and some floor time, I was doing floor time for them, and, you know, lovely Orthodox Jewish family. And they were like, listen, we have this little preschool here, it's all Orthodox kids. But you know, she can come here in their ABA center. And I was like, I mean, I know their program. I know, their center, I know, the therapist, I work with them. And I trusted them. And I was in the building, and they were collaborative and amazing. And she had nothing, you know, I'm me, I'm the most vocal critic of some of this stuff. And I was completely 100% comfortable the entire time with every single thing that they did. And they had cameras, I could watch it any time. I mean, it was lovely. And people probably, you know, would be very angry at me if I said that my kids who may be a preschool or call me a hypocrite, but it's not, we need to look at the practices. The only practice that matters about ABA is the one that your kid is experiencing. If you're a parent, that's really what you need to look at. Are you okay with this person with this behavior plan, with this therapist with this practice, there are structural things that need to happen. But for the average everyday parent, they're not trying to do ABA reform, they're trying to just get them their kids have health. And so if you look at just what they're doing, right, I can give you some tools to kind of look at that and say, Yes, to this, and no to this, or how to speak to a therapist to say I'm really not comfortable with this aspect. Can we try something else. And that's a lot of what I do is kind of give parents the tools to make things workable, even if they're not, you know, on paper, you know, called the right thing, it doesn't matter at the end of the day, as long as the techniques that they're using, and the goals that they have are affirming. I don't care if you call it ABA, that's
KC 37:30
really what I'm hearing you say is that, like, what matters is that you have the right goals, and the right techniques. And, you know, whatever they're calling, whatever therapy they're using, whatever they're calling that center, that that's what you're looking for. And I do want to get into, like what you would consider like some red flags for goals and techniques. But one thing that came to mind for me is that I remember hearing the thing about like withholding, someone said like, you know, that's not right to withhold a toy from a child until they do what you want. And that's, that's really like a two dimensional statement. Because I had two completely opposite experiences that really made me understand this. Okay, so I saw a video of someone doing ABA, and they were sitting at the table, the child was on one end, the practitioner was on the other. And they had like some blocks, and the child wanted a block and the child was saying block. And before the child's hand got to the block, she pulled it up out of range. And when I want the block, I want the block, and she went block block. And she held it even higher. And when I say I want the block, say I want the block, and then the child goes out, but she was good and like handed the child the blog, and I even showed it to my husband and he was like, I don't something about that, like rubs me wrong for some way, right? And it just didn't sit right with me. Right. But then, like, My child has an occupational therapist that does a floor time approach was a type of therapy. And I started watching. And I started noticing that like there were times where technically it was, quote unquote, withholding. But they're on the ground. They're playing with each other. She put in a lot of work, understanding how she connects and connected with her in that way to where every day she walks in every time that she walks in. My daughter's like, Oh, yay, she's here and they play and you know, so my daughter would come up with her paw patrol because she loves Paw Patrol, and they play together and she'd have the little paw patrol and she'd be running around. And then she'd like, hover, go up, and my daughter would reach for it and she'd go, Oh, he's flying. He's flying. Where is he? Where is he? And she would like me Make it this like playful, quote unquote game to see if she could elicit whether it was a verbal response or behavior response from my daughter. And then but no matter what, then she gave her the toy. Yes. And she would explain like, it's not like I don't want to induce a distress, what I want to do is give her opportunities where I'm pausing and allowing her to practice something. And that was to me such a lightbulb moment, because you're right, like, it's not about like, withholding understanding what withholding is, it was all these other nuances about like, are they playing? Is there a relationship? What's the even down to like, the tone of voice that each practitioner was speaking to the child in?
Dr. Robin Roscigno 40:44
Yeah. And it's like, you know, in the first example, if she's trying to teach requesting, right, she's teaching that she requested, she did the thing, right, she just didn't do it in this very prescribed kind of neurotypical way of this full sentence, right, in this particular tone of voice. But she requested the block, she said, I want the block in so many words, right? She said, the block pointing and asking for it. If we're trying to extend the length of an utterance, there's lots of ways that we can do that we can embed that in play, and I can, you know, make the Paw Patrol say that, and I could say, but I want the block, right? Like and be like, silly and like make them fight so that they're hearing that language over and over again, right? That's totally fine, right. But sitting in front of them and saying, I want say I want and like dangling it in front of them, right is just dressing, any child would be distressed by that. So this is also nuanced. And I think people want a list of like, This is bad. And this is good. And that's I think that's where we fall into that kind of binary of ABA, bad, everything else good when actually we have to kind of train ourselves to understand, you know, actually to be more kind of empathetic, right? of, you know, you can look at your child's experience playing with other therapists and realize she's not distressed, she's not upset by that. It's a opportunity to learn and practice a skill that is well within her kind of zone of proximal development, right to use her for teachers out there. But kotsky. But in the other example, you know, she can one it's not a skill she has, right, so she's asking her to do something, you know, she can't do and then like, how is she teaching her? What does she teaching her? Right? Testing is not teaching. And that's a lot of the problem I have with ABA is instead of giving her opportunities, it's constant assessment, Do this, do this, do this, you do that at the end? Right? Once they've learned it, but how are you teaching them? How to say a longer sentence? are you modeling it for them? How would they know to say I want the block besides you just saying, say I want the block? Right? How are you embedding that in your everyday interactions is really a bigger question. So to me, it's kind of too simplistic on the teaching end, and also really creating a kind of distressing upsetting environment for the kids, because they're not actually being taught to do the skill. They're just being tested on it. And then, you know, motivated to do it in air quotes.
KC 43:01
Yeah, it really seemed like in one instance, like, if I was that child, like in the one with like, say, I want the block. What, like what that seems like it's teaching a child is like, if I want to be taken care of, I need to figure out what people want and give it to them. It creates a lot of whereas in the other, yeah, like, but like in the other instance, it seemed like what she was learning was, if I want connection with a person, I need to learn what types of things are connecting for me and for that person.
Dr. Robin Roscigno 43:38
The other thing was eye contact, right? It's like people are so focused on eye contacting eye contact, right, but the skill of eye contact is actually about social referencing, right? We need to reference other people, and we need to show other people that we're paying attention to them. And we need to look at other people and see what they're doing because that's what you know, kind of existing in the world looks like right? As we observe other people, we connect to other people. We find ways to, you know, speak to other people and have relationships with them. And
KC 44:05
because we want relationships like I will never forget, like listening to an autistic adult on Tik Tok say, there's this myth that autistic people like to be alone. And I always spent time alone and my whole family, we just oh, that's just Maggie. Like, she likes to be alone. She prefers to be alone. The truth is I don't, I am deeply lonely. But I learned very early in my life, that I was just too much. I was just too much of a burden that people were irritated with me people were aggravated with me that I was awkward. And so I just learned to withdrawal. And I think to your point of talking about goals is like, is my goal that I want my child to do social referencing, because like that's what a person should do? Or is my goal like, I know my child wants relationships, and I don't want to change who she is, but I want her to have the skills and the knowledge to know how to engage in a relationship. So she's not Somebody who's lonely and hostile withdrawal. It's so
Dr. Robin Roscigno 45:02
true. And, you know, teaching people skills is not a bad thing, right? There's this kind of idea that like, any kind of, you know, teaching of neurotypical norms is bad. But we all have to navigate the world in a lot of different ways. And we have relationships with autistic people, and we have relationships with with neurotypical people, my daughter is nine, and she wants, you know, she has friends. And sometimes there's times where, like, you know, she's trying to do something socially, and it's not panning out the way she intended it to, right. She's not getting the effect that she wants. Am I an ableist? If I say, Hmm, I think you know, could we try it a different way? Maybe don't, you know, maybe don't yell it like that? Or maybe, you know, pushing them is not the right answer. What else could we try? Right? Because she wants to have relationships with kids, she wants to be included. And sometimes something she's doing is bothering somebody. Right? I would be failing her. Right? If I didn't say, I think your approach is a little off in this case. And maybe we could try something different. Let's practice it, right. So here's some things that you can try to say tomorrow, and I'm going to teach her something right. I'm not just going to say, Stop yelling, here's a gummy bear. Right. If you stop yelling for 10 minutes, I'll give you a gummy bear, I'm going to say that really hurts people's ears. And I know you want to be friends with these people, and you're talking really loudly, and maybe it's bothering them. So maybe we can try practicing. Let's do at home. Right lowering our voice and conversations or let's practice how much is the right amount of talking when you're talking to people? Or how do we ask a question about other people? You know, so it's helping her get the effects that she wants. But it's I'm taking my cues from her. I'm not saying everything you do is wrong. And here's how we can make you better I am I kind of looking at her and saying, Yeah, this is not going how she wants to go. And I it's you know, some of it is some autistic stuff that's rubbing people the wrong way. And here's how you can kind of, you know, adjust your behavior to get the result that you want, if you so choose, right. So
KC 47:05
when you were talking about social referencing, I don't want to miss that point. Like, can you talk a little bit more about like, what social referencing is? And like, how can we teach that to a child in a way that like is affirming of their, their, like autism versus something that's like dis affirming, like forcing the eye contact? Yeah, so
Dr. Robin Roscigno 47:25
like, Okay, so let's take an example of a kid who you know, are hug eponymous is right, the kids who love to hug and touch and you know, hugging people without asking that kind of stuff. I'm touching people's hair. That's a big thing. Like little kids, let's say you have a child who's extremely touchy with other people. And it kind of old school ABA approach might be okay, sit down, quiet Hands, hands to side. Good hands to side. Good job, like, you know what I mean? Like teaching like a kind of behavioral response, right? How I would teach it as I was like, Oh, hold on, look at our friend, her face. Not happy. She doesn't like that. You see she her face? Her mouth is like this. She's going away from you. I don't think she likes you touching her body. How can we say hello? Why don't you show her your toy? Right and giving them options to try and say, Well, I think you're in her bubble. I don't think she wants you to be in her bubble. Right. So giving them kind of cueing them into the signs that it's not going well, right. And kind of doing that think aloud, speak aloud, cueing them to look at the things that are cues that it's not going well, and then giving them tools to do something else, right and say, Oh, if we want to talk to a friend, we can show them a toy. We can tell them a story. We can ask them to play. Maybe I'm even would make like a little visual of like three things to try. And I was like, well, let's check our chart. What could we try? And your maybe I would pre plan it with them? Oh, we're gonna go to recess today? Which one do you want to try today? You want to practice with me first? Right? And then having them try one. And then afterwards being like, did that work? How did it feel? That kind of stuff, right? So I could get any kid to Stop hugging people. Right? Stop hugging people. I'll give you a gummy bear. But what did we actually teach? And how did we help that child to reproduce that result in novel situations?
KC 49:21
Okay, and so in the instance, like, with eye contact and social referencing, like, it seems like the point of making eye contact with someone is to signify I'm listening to you, I hear you and I care about what you're saying. Like I'm tuned in. And what I hear you saying is like, hey, there are other ways that people can indicate that they are listening, that, you know, especially if we understand like, there's a reason that they're not making eye contact, either it's uncomfortable for them or something like that, but like, is there a different way that we can signify listening so that you can maintain those relationships Whether it's you know, with a teacher with a friend, right, so
Dr. Robin Roscigno 50:02
you know what I do, I'm not a great eye contact or myself, I sit off to the side and I like kind of do like quick eye contact, but I, you know, oftentimes will say, I am listening to you, I just can't make eye contact and listen, at the same time, I don't want to think I'm rude. But I am listening intently to what you're saying. And then I respond in a way that shows that I've listened, right. And so you know, it's also kind of training other people that like, eye contact is a very particular thing that we like look for, to mean like paying attention, but maybe other things mean paying attention, right? So it's not just that it's a kind of both sides need to learn each other's interactional styles, and not always kind of going towards, you know, what neurotypical people do is the right way. You know, what I mean? So
KC 50:47
if a parent is listening, and then they're kind of hearing saying, like, the right goals, the right techniques, like what are some things that you would suggest for, like, what would be appropriate goals? And then what in your mind would kind of maybe raise a red flag for you in terms of goals?
Dr. Robin Roscigno 51:02
Okay, so goals that are compliance for compliance sake, right? So and so we'll, you know, respond verbally within three seconds with, you know, the desired response of blah, blah, blah, right, where it's adult directed, I decided you should learn this. And so you're going to learn it. And the goal is for you to comply. For what reason? I don't know, right? We create kids that are just so dependent. A good goal comes from a kind of advocacy perspective, right? Is, okay, so this is a behavior that is inhibiting my child from participating in, you know, society life, the things they want to participate in family life, how can we address that goal in a way that is like workable for both people? So you want the goals to be truly beneficial for your child, and not beneficial for the teachers, for you, for everyone around you? Right? I mean, you know, sometimes kids really like to talk about the same thing over and over and over again, right. And I saw a study recently where the behaviors were trying to get the child to stop talking about what they like to talk about topics that the parents had selected. The irony, and that is the now the adult is doing exactly what they just said that the kid was doing wrong. Also,
KC 52:14
like what child wants to do that like neurotypical or otherwise,
Dr. Robin Roscigno 52:18
what are we going to talk about when we talk about like taxes with my six year old? So now we've just said, No, you doing it? As long as you're autistic? You should talk what I like because I'm not autistic. And my things are right. Okay, like little apple tree situation here. Right? So in that case, right, if a child is dominating a conversation, it's because they're excited about something. Right? And a different approach might be, I see, you're really excited about this. Not everybody likes Minecraft, what do we talk about with other people who don't like Minecraft? Right? What are some topics that you like that they also like, and helping them to kind of navigate that in a more kind of skillful way. As opposed to just saying, if you talk about what I like, you know, I'll give you a token, or you can have an iPad or whatever, it's kind of deeper learning of how do we relate to other people? It's not a triage approach, right? It takes a lot longer to kind of teach these complex social skills, but it's worthwhile work. So I think that that would be the goal. Yeah,
KC 53:16
it reminds me of like, I mean, I feel like this is applicable to like, all types of neuro divergence, obviously, not just autism. I mean, so for me, you know, I have ADHD. And one of the question, there's, like, on your self assessment about social stuff is like, do you interrupt people a lot? Do you have trouble taking turns? Do you finish people, sentences and correct people. And when I first took the self assessment, I remember being like, Oh, I don't do that. But then when somebody really dug into it with me, and what I recognized was, I may not do those behaviors. But internally, what drives those behaviors is still happening in me, I'm not listening to you, I'm waiting for my turn to talk. You said something wrong. And that's all I'm thinking about. And so I can't hear you. But the reason why I wasn't doing those behaviors anymore is because when I went through 18 months of behavior, therapy, intensive behavioral therapy, every time I interrupted it was pointed out, and I was told I was being selfish, and I was shamed, and I was punished. And you know, when I listened to people, I was really praised. And they literally extinguished the behavior of correcting and interrupting and not waiting my turn through a system of rewards and punishments. And I came to believe that not only was that behavior bad, but that that's a bad thing about me, that that is my natural tendency. And what I wish would have happened because this is where like, you and I talked about how we get so black and white about it, where we feel like the only it's like, either you extinguish the behavior, it's not right, or you don't get to say anything about the fact I constantly interrupt and correct people, right. But what I wish would have happened because again, like I wanted relationships and like that particular behavior was having an impact. I found people that I didn't recognize and was damaging the connections I really wanted, I wish somebody could have sat me down and say like, Hey, here's these behaviors, like, that's the way your brain works, it's moving really fast that you, that's your style of communication that you enjoy. But not everyone enjoys it. And here's how it's impacting the people that don't enjoy it. And so like, let's think of some ways to, like use different methods of communication for people when you're wanting to have that relationship. And the cool thing about as an adult, I kind of just got to that place by myself. And actually my best friend's autistic, and she will absolutely be bulldozed by that type of communication. And it does not serve our connection to each other for me to communicate with her that way. But I also got to learn that I find people that do like that communication, I find other people that love that overlapping style of communication, and I just let it rip. And I, you know what I mean, and we sit there and we interrupt each other, and we correct each other, and we talk over each other, and everybody around us thinks we're fighting. But it's like, from this place of I understand my behaviors, I don't have shame about my brain, but I understand the impact. And I'm able to choose different things when I need to reach my goals. And that's kind of what it like, reminds me of, yeah,
Dr. Robin Roscigno 56:21
it's a toolbox, right? It's a kind of like, it's not exactly the same concept, right? It's totally different routes. But it's analogous, I guess, to the concept kind of, of code switching, right. And I talked to my daughter about social skills, I say, we do it here at like this at our house, because we're all autistic. And so we like to do it like this. Other people don't do it like that, right? Like when you're at people's houses, you know who aren't autistic, right? They want to have like, we just take turns info dumping at my house, basically, it just nonstop of just people. My husband just talks about guitars, I talked about autism and research. And my daughter talks about Minecraft, we just talk at each other, and we are fine with that. But it was just going somewhere else, I'll say, you know, they are not autistic. So they are expecting more of you asking them about their stuff. Right? Here's some questions right? Or maybe say try and say like four sentences about Minecraft, and then pause and ask a question. So I give her like real tools to do if you want that result, if you want to go and you know something about Minecraft and see what happens. That's, that's on you. But I'm going to like, give you the tools to do it and not shame you for that being the way that you want to do it. It's just a different way of doing things. You know, and that's not the case with all behaviors are some that like you just genuinely cannot do, right. It's not just like a preference, whether or not you want to pop your eyeballs out of your socket. But some things are like that. So when we're looking at goals, right, I would say safety, hygiene, there's things that are non negotiable, right, we got to work on those things. And we can work on them in gentle ways, sometimes, but in some cases, we got to kind of get to the root of it very, very quickly, you know, and stop something from happening, that's truly dangerous. That's one case. But there's a lot of cases where it's this kind of these, like, neurotypical way of doing things versus neuro divergent way of doing things. And, you know, people are being pushed into one as if it's just right. When it's really there's different ways of interacting in the world. And people who skillfully can navigate that, you know, are better off.
KC 58:26
And when you are talking about like just addressing the behavior and not like the underlying roots, I often see a big difference between like, let's say you have a child that's like grinding their teeth, like so hard and so intensely, like the whole room can hear it. And you're thinking like, Okay, number one, this sounds like nails on a chalkboard number two, like this can't be good for her teeth, or his teeth, right? Instead of having this approach of like, okay, for every, like, five minutes you go without grinding your teeth, you get a reward, or if you grind your teeth while we're playing, we're gonna stop playing and hold until you stop. It's almost like, Okay, why are they grinding their teeth? Like is that giving them a sense of like, sensory input that's important to them? And how can we redirect that like, legitimate need to a more like, conducive way of doing that? So, you know, do they need a chewy to chew on? Do they want crunchy food? Can we offer you know, if a child is old enough? Like, can we offer gum like those type of techniques, I've noticed a difference between someone's approach of like, validating the need, but underneath the behavior, while acknowledging like the behavior itself is either like, not safe, or it's not going to get like it's going to get in the way of that child's goals. And so can you talk a little bit more about like, kind of technique, green flags and red flags that you see?
Dr. Robin Roscigno 59:46
Yeah, so I mean, red flags, I would say are things that are unnecessarily physical. There's a technique called errorless teaching where basically let's say I give you three things and you're supposed to pick one of them and you pick the wrong one people will do Physical, the physical prompting, will they'll either take their hand they do hand over hand or whatever, and say, No, it's this one touch red, right? Oh, good touching red, right? So anything that has physical prompting in it, in the beginning, I think is something that I would be is kind of a red flag, it's a soft red, there are cases where we have to kind of physically guide someone because they're learning how to hold a pencil, etc. But if we're using physical prompting for compliance purposes, that's a no for me. Because when we have kids that are getting conditioned to allow people to manipulate their body, it's creates a really dangerous situation, this sexual assault statistics for disabled women are horrific, truly, I mean, it's a majority of women with disabilities that will be sexually assaulted by in their lifetime. And so I truly cannot support a child being conditioned that their body can be manipulated by literally anyone around them. Right for compliance purposes, that creates a very dangerous situation. And so I am against having kids have that be normalized, right, that their bodily autonomy is that they don't have any, I just really can't get behind that. And I would say another one is kind of extinction plans. And there's a small, very, very small, he's like very, very, very dangerous behaviors. But generally speaking, we're doing extinction plans for things that are just minor annoyances, extinction plans are traumatic, you know, when someone is ignoring you, oftentimes they have they call it an extinction burst, that behavior gets a lot worse, right. So if a child is trying to get your attention and you start ignoring them, then oftentimes they'll do something worse, right? They'll get on top of the table, they'll climb on top of the furniture, throw something, right, and then they'll do escalate until you can ignore them because they're unsafe. And that then you have to give them attention at the very apex of the behavior. And actually, you're reinforcing a much worse behavior. So I generally do not support extinction plans. I also don't really like things that are like exposure. So I had a childhood that was working with a family and the child had struggled with changes in their schedule. And so their solution was that every day they were going to purposely mess with the schedule to desensitize them to it. Why, right? Like, that's not helping him. It was just making him a nervous wreck. And he didn't want to go to school because they would purposely tell him he was going to do something and then not do it just to like, help him get over his thing with schedules. You know, he did he need some coping skills. Yeah. But are we going to get coping skills by purposely upsetting the child every day? No. So it mean things that are like kind of intentionally distressing, also overcorrection. That's when they give them like an extra punishment. Like let's say you scribbled on one desk, and now you gotta wash 100 desks or something that's, you know, overly punitive things like restraint, seclusion, conditioning, affection, using a parental affection as a reinforcer or a consequence, period, end of story, making kind of social approval or inclusion contingent on behavior, right? You can't sit with us unless those kinds of things, right these like shame based punitive things you'll know them when you see them truly, I mean, it's not subtle.
KC 1:03:09
Let me ask you this around technique. So when it comes to sensory stuff, this is one that I have a question on because it's like, okay, there's nothing wrong with like having a sensory aversion to random things. But I also can see how, like, it could really impair your day to day functioning, right? Like if you don't like to feel certain things, you know, whether Okay, now you can't shower, or maybe you want to play but you don't want to play and things like that. And so how do you feel about when there are sensory goals? Like, okay, we're gonna get the shaving cream out, because this child doesn't, you know, like, fluffy feelings or you know what I mean? Or they don't like wet so let's do water play like, is that like a black and white always this always that? Or is that? Is that a technique issue? Is it a goal issue? What are your thoughts on that?
Dr. Robin Roscigno 1:04:00
I think it's a goal issue, right? So you have to think about is this a life skill or not? Showering, you got to shower. So if you have a thing with water, right, we have to do something about that. And that may involve like, you know, slow introductions and to playing with water, etc. Plus maybe some deep pressure before they go in the shower, using a timer favorite. So like, there's all different things that you can do is going to be the kind of holistic approach right? Shaving cream can generally avoid shaving cream. I don't think that touching shaving cream is a life skill. I don't touch shaving cream ever. I don't shave a shaving cream. I don't need to touch shaving cream. So I don't understand that's always a goal for kids that they touch shaving cream. I'm like, Are these kids like becoming barbers? Like I don't? Why? So to me like that. The goal needs to make sense. If it's unavoidable, then yes, you have to do something about it. But if it's just like you think they should for what reason? I don't know. I mean, I had a kid in my class I was petrified of mascots, like drop stopped mascots. And they wanted to desensitize them to mascots. And I was like, I don't know, guys, like, I'm pretty sure we know where they're going to be like, he could just avoid them, like forever indefinitely. He could just not go to Six Flags or parades. And I think he'd be fine. Like, I don't think that this is like a worthy goal. Like we have bigger fish to fry. So my metric is like, is this a thing that is actually impeding them? Or it's just a thing you think they should do? For what reason? And so showering? Yes, we got it. You got to do something with water. My brother used to be petrified of the wind, you couldn't walk outside the door? Yeah, we have to do something about not being able to leave your house because we're petrified of the wind, you know, we got to come up with something that you can put on maybe get a little bit, you know, put a fan practice of putting your face by a fan. But mascots, I'm not going to die on the on that hill. So I think that's what I get, if parents look at and therapists look at is like, what is this goal for? Is this actually helping this child? Why are we doing this as opposed to other things? Like when I see kids, the firt, where speech therapists are drilling that they say mommy, right first, right? Say, mommy say, Mommy, I love you, right? Because the moms want to hear it. That's really sweet. And I hope that all mothers hear that in the way that their child can communicate it. But if we have a child that can has to go to the bathroom, or can't tell, tell that something that someone's abusing them at school, right, then that's what we should be teaching first, like a focus on functional communication, right? If they can't say they're sick or in pain, but they can say, I love you, Mommy, we haven't done our jobs, right? Because that's for the mom. That's so that the parents can say this is good therapy, because they said I love you, Mommy. And I've always wanted to hear that. That's really sweet. But also, this child does not have functional communication. And that's what we're here to teach. Right? And so we have to actually think what is benefiting this child truly, and not at what is not just a thing we wished our child would do if they were neurotypical.
KC 1:07:00
I had another question. I want to know if you have any thoughts about this scenario. When I talked to other parents of autistic children, one of the things that happens, you know, cuz there's a lot of therapies, you know, ABA is one therapy, but there's also like occupational therapy, floor time, speech therapy, equine therapy, play there, like all sorts of things. One of our experiences as I talk to other parents, especially with things like OT, like occupational therapy is, so when you talk about like, is there a real life goal, sometimes I feel like occupational therapists will have a goal, that doesn't make sense, where it's like, we want to get them on a swing, and your kid hates swings. And so like, according to what you're saying, it's like, okay, if I can just avoid swings, but they'll have an explanation for how like, the skill of being on a swing will affect other skills or other abilities or other something abilities down the line. And what I find as a parent that's really difficult is that, because I don't know anything about the words and what they're, you know, they're talking about the limbic system. And, you know, your ability to, I don't know, your ability to hold a fork is really about the way the left brain is talking to the right brain. And we learn that with the inner ear, and how gravity affects the blah, blah, blah. And so, you know, getting on the swing will affect their ability to hold a fork, right? It'll be something like, and I'll be listening and be like, I have no idea whether you're full of shit or not, like, this could be like your expertise, and I don't really know anything about it. And like, all these things are interconnected. Or it could be just like, nothingness or could be weird. It could be like, woowoo stuff that people say, I have no idea how to approach those things.
Dr. Robin Roscigno 1:08:41
Yeah, I mean, okay, so swinging, that's not Yeah, that is actually true. So it has to do with like core stability, postural insecurity. So if kids can't be on a swing, right, it's vestibular just kind of dysfunction. And that will impact anytime that they feel that they're on shaky ground, right. And it has to do with underlying kind of core strength issues, vestibular regulation, so that's not nonsense. That actually is true. I would say OTs, generally speaking, they have a really scientific, it's a different field, right? They behaviorists training wise, take six classes on a test. It's not a very extensive training. They're not trained in autism. They're trained in behavior and reducing behavior and the techniques of behavior analysis. So they have a very different approach. OTs go through like a lot, a lot of school and it's scientific. So generally speaking, they know what they're talking about. Sometimes they'll get on like weird stuff with like this shaving cream and stuff. I
KC 1:09:37
don't know about the brushing either. Like at one point, we had an OT tell us like, you need to brush her skin every two hours with this brush and like, mica doesn't like that. And then I'm going like, I buy this like, okay, the swing thing doesn't make sense. But okay, I trust you. But then it's like things get like, I have no idea. Like, is the brush thing the same as the swing thing? Yeah, that's totally connected, or is it like not,
Dr. Robin Roscigno 1:09:59
I mean, it's hard. I just say I can't give like a, you know, every it's kind of a case by case basis. Right? Which is why I think it's important to have like to develop community around you. The brush thing is meant to help regulate them if it's not regulating them. It's not working right, but I think I remember when you texted me you were like, so telling me to brush my kid, that normal? And I was like their hair. You were like, No, it was like, Oh, yeah. Okay, I got you. But I think you can ask, right? What is the purpose of this? What is this doing for her and see what they say? They say, Well, you know, it's just getting her to touch other textures. You say? Does this texture impact her touching other textures? Because this isn't a texture, she encounters a lot. So I'm just curious why we're focusing on shaving cream, when we're actually having a bigger issue with water. Maybe we could focus on that just a thought you can ask like the swinging I'm having trouble understanding is this like developmental skill that she's learning that she like, need to do this to do other things? Or is this more about a preference for swinging or not swinging? I'm just I'm not really understanding what the purpose of this is. And they should be able to give you a competent answer. If the answer is something like, so other kids will like her, so she won't stand out. So she'll fit in better. So your life will you know, so that you can go to do shaving? You can go to shaving cream, um, because kids their age, like shaving cream, those are all kind of like not great answers, right? We don't do therapy things just because other so that other kids won't bully them, right? We address bullies, we for bullying, we don't make our kids have to not get bullied by their behavior. So I definitely ask there's not a hard and fast list, right? Because people can say one thing, they can do something that I say is a good technique for weird reason. So it's go over your behavior plan, like fine tooth comb, and anything that you're like, I don't get why she's got to do that. Then ask right and say, What is the purpose behind this do a little bit of research, right? Like what you know, type and swinging and whatever words they say vestibular system, and learn a little bit about it, the more you know, the more of an advocate you can be for your child. And knowing a little bit about autism really does help. Alright, so
KC 1:12:12
my last question that I want to kind of pose to you is, I find that a lot of parents when their kid gets diagnosed, and they first start seeing therapists and being in therapy, there's this really overwhelming amount of like homework that that we are given, that seems unrealistic, where they're like, Okay, they need and I haven't experienced all of this, but I've talked to other parents that do where it's like, okay, they need to be in 40 hours a week of this kind of therapy, they need speech three times a week, they need to you to brush them their skin every two hours every night before they go to bed, put the headphones on and listen to this music therapy thing. And I'm wondering, like, if you can speak to that at all, because as a parent, you know, like, you have this fear of, I have to do everything so that my kid is going to be okay. And it's kind of hard to know what to do when you get hit with that. And you're thinking I have a job I have other children I have like, how do I how is this? How is this manageable?
Dr. Robin Roscigno 1:13:11
So I'll tell you what, I don't do any of it. And I'll tell you why. Because her home is her home, she lives here. This is her home, where she lives. And my home where I live, I don't want my boss yelling, I you know that I'm not doing this thing I don't want to be doing, you know, any of that. I just, I want to be relaxing with my family. And that's where I unmask and I spend time with my family. And so I really don't do any of it. I don't allow behavior charts in my house period. If they're like, you know, give her a thing every time she whatever. I'm just not going to do that. Right. So I just don't the way I explained therapy to parents is it's like making a pie crust. If you've ever made a pie crust is you got your like water that you're going to add in, you've got your flour and your butter together. If you add therapy that starts to make it fall apart again, right? Your kid is tired, you're overwhelmed, you're stressed, they're stressed, it's too much, right? You added too much, right? So it's literally just add a little bit at a time. It's not going to you know, fix them, they're going to still be able to stick at the end of it. It's enough to support them that things are going reasonably well and then you can stop. It's okay to leave stones unturned. You don't need to find every weird therapy. There's no therapy, that itself is a magic pill. It is sustained effort over time. That's it, right. And so there's no magic element that's going to really change it. It's creating that supportive environment, getting them some skills and some help in the areas that they need it just enough that they still have a childhood, right. We want kids to have a space where they are not being you know, earning things Write that they can just be. And if your child has no space, and every hour of their leisure time is taken off with therapy, right, then we're denying our kids an opportunity actually one to apply things that they're learning in therapy, and to to have a childhood. And so I think our kids really do have a right to some time, that's not therapeutic parents are told all the time, you should be doing this all the time. I don't, when my kid is nine years old, and I tie her shoes every day, I don't care if she can tie your own shoes. I know she can. And she ties in when she's at school. But she wants me to do it, because she has a heavy mental load navigating her day, and she wants that little bit of connection and care for me. All right, I can make my own coffee, but it's nice when my husband does. And so I'm not going to make her use her skills all the time, I'm going to mother her, because she deserves that. Just because she's autistic doesn't mean she doesn't deserve me caring for her my reinforcing her bad shoe tying behavior, probably I don't care. Because
KC 1:15:59
that's been like a big red flag for me, though, is that I have noticed that sometimes there will be expectations on an autistic child that you would never put on a non autistic yet. Yep, like to use full sentences to, you know, never sit a certain way. And I kind of like so like one example is like W sitting. And if people don't know what that it's when you sit on your bottom and you will explai your feet out so that your knees are together and your heels are separate and a little W and it can definitely cause issues in your body if you sit like that forever and ever, right. And so when it comes to like, okay, correcting that like teaching them a different way to sit helping what their core strength, you know, when you talk about, like, letting her have a space that she just gets to be. That's like one tiny example of like, the ways that I've been trying to do that, where it's like, okay, I get that, yes, it's important. And I do if I see it, you know, hey, fix your feet, let's sit crisscross applesauce, let's do it. But I'm also not doing it. Like every time I see it. And there are like specific times where I'm not doing it. Like, if we're in the middle of, you know, a speech session, sit however you want, you've got one thing to focus on at this moment. Or if we're, you know, maybe if we're doing storytime together, it's like, it doesn't have to be corrected every single second of the day.
Dr. Robin Roscigno 1:17:21
I mean, it's so true, right? It's like, we all need some downtime. And so it's good to like, let it go. Sometimes. I mean, I talked to schools about this all the time, because they'll be working on you know, a kid learning some scale or whatever. And then at recess, they want to have the speech therapist go follow them around recess to go have them keep doing it at recess. What are the other kids doing at recess? Are they doing schoolwork? No, they're running around. Right? So everyone, recess is leisure time for children at school. It's not more school time, it is actually a break from school. And so if all of the other kids are getting a break from schoolwork, the autistic kids should too. Right? That's why I don't like Lunch Bunch any of this nonsense, right? They deserve a break too. And I don't care what they do. My kids when I was teaching, they would do the weirdest stuff outside, spinning around, sitting under stuff, making piles of wood chips. And you know, people would be like, aren't you going to stop them are going to teach them how to play more appropriately. I was like, He's happy. He likes doing that. If he came to me and said, I want to play with a friend. Or if he was wandering around looking like he wanted to play with someone, then yeah, I would jump in and say, Hey, let's go talk to somebody. But he doesn't want to do that. He wants to do what he's doing right now. And he gets half an hour a day at school to do what he likes to do. Far be it for me to say that that's not a good way to spend your time that looks actually kind of fun. So I'm gonna just let him be because all the other kids are playing. Right? So it's like those kinds of things. Like if other kids are getting that time, right time to just kind of lay on the couch and sit weird and be upside down and you know, stim on the videos or watch this, whatever, I'm not going to take that away from my kid because he's autistic. Right? Not everything has to be a teachable moment. That's my other thing with like these Lego therapy, Minecraft therapy, let's not make everything they like into therapy. Just because they like it. Can they just have a hobby, like something that they like? So it's like, I'm kind of against like therapy using like, literally everything, like, just let them have a break.
KC 1:19:20
There's a lot of I find like environmental changes you can do at home to like, let your kid be your kid like, okay, yes. Maybe we don't want them jumping on the couch because they're gonna eventually jump themselves on top of their head and crack their skull open. But like, Can we get a little trampoline? Is there a smaller thing they can jump on? Like jump to your heart's content, right? Like there's a lot of things that I find that we can change about and I feel like this is true for any child like the degree to which you can change the environment first,
so that there isn't this constant. Don't touch that. Don't do this. Don't go up there. Sit down at the bottom.
Dr. Robin Roscigno 1:19:54
I mean, I when parents are like, Oh yeah, when parents are like, oh, like they keep touching the whatever. I'm like, Well, why put it away, like, put it somewhere else, and then they can't touch it. It's like we could solve some of these problems, I think we want to put everything on the kids because people want to like they start thinking autism is the problem, right? We're all united against our common enemy of autism, when actually like, we could solve a lot of these problems, we could just not have an access to that, right, we could just not put that in there I view change our environments quite a bit, we could, you know, I didn't have a coffee table for years, like no coffee table, because she would jump off the couch, and she's gonna crack your head open. So I just moved it. And then I had like, a little like crash pad thing that I would drag out from the garage every once in a while and like, throw in between our sectional and she jumped off the sectional under the cushion. You know, now she's nine. She does want to do that, though. I can, you know, have a coffee table. But make your like, as you you know, you're so amazing at teaching people, like make your space work for you. Make your holidays work for you make your parties work for you. Like just do it in the way that works for you, and for your family and not the way that you think it should be done. That is like the enemy of a lot of people's happiness. You know? Yeah.
KC 1:21:08
Well, thank you so much. Dr. Robin, this has been amazing. Can you give your own shout out? Like where can people find you? What kind of things do you do that are accessible to the public? Do you have any recommendations for resources for maybe parents that are looking to understand more? Yeah,
Dr. Robin Roscigno 1:21:24
so um, you can find me on Tik Tok, as I'll teach and on Instagram is all teacher official. I'm also on LinkedIn, all teachers on there. And then on there as my regular name there, I do content about like hiring there. And I also have a business or teach. I do consulting for parents, parent courses, education, I'm kind of building some new stuff right now. So I'm gonna have some new announcements soon, some different courses and things for parents. And people can always reach out to me if they want kind of individual support. I do individual consulting for families also. So lots of ways to connect. And I really appreciate it.
KC 1:22:00
You also have a really awesome TEDx talk that you can watch on YouTube. Tell everybody the title of it, your
Dr. Robin Roscigno 1:22:06
autistic child can have a great life. Here's how. And I talk a lot about a lot of the things we talked about today about letting our children have childhood and you know, how we can accommodate our kids and have a much easier experience kind of with the diagnosis.
KC 1:22:21
So awesome. And then I will I'll get with you offline and get maybe any recommendations for like books or podcasts that you have and we'll make sure to drop those in the show notes for sure. So every person that I interview for this series, this episode will make sure that those are all in the show notes for you guys. Super
Dr. Robin Roscigno 1:22:36
awesome. Thanks, KC. You have so nice chatting. Thank you.
Transcribed by https://otter.ai

Christy HausslerAugust 5, 2024

104: The Controversy of ABA: A Discussion with Researcher Dr. Robin Roscigno

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