Autism, Behavior, & Everyday Parenting with Guest Stephanie Mueller, BCBA

In this episode of The Savvy Patient, cohosts Erin Stein and Dr. Gillian Goddard welcome their very first guest: Board-Certified Behavior Analyst (BCBA) Stephanie Mueller. With nearly 20 years of experience in the field, Stephanie helps break down autism spectrum disorder (ASD), clearing up common misconceptions and explaining how diagnostic criteria have evolved over time to significantly expand access to vital insurance coverage and care. Stephanie outlines the core diagnostic markers and the push within the field to distinguish profound autism for individuals requiring lifelong care. We tackle persistent myths—reaffirming that vaccines do not cause autism—and offer guidance for parents on seeking care. Plus, we discuss how teens and adults may receive a later diagnosis as life changes affect coping skills. 

Stephanie introduces the core modalities of support (Occupational, Physical, Speech, and Behavioral Therapies). Then we delve into modern Applied Behavior Analysis (ABA, discussing historical criticisms of ABA, and how it should look for families. Plus, Stephanie gives us real-life examples of how ABA’s core concepts—like positive reinforcement, negative reinforcement, and functional communication—offer powerful, practical strategies that every parent can use to encourage positive behaviors in everyday family life.

Resources and References:

You can find Stephanie Mueller on Instagram @stephanie_mueller_BCBA or reach her at stephaniemuellerbcba@gmail.com.

For an overview on the elements of Autism Spectrum Disorder we discussed: https://pmc.ncbi.nlm.nih.gov/articles/PMC7082249/

2020. Hodges, H., Fealko C, Soares N. Autism spectrum disorder: definition, epidemiology, causes, and clinical evaluation. Translational Pediatrics. DOI:10.21037/tp.2019.09.09. 

For more on Applied Behavior Analysis, both its effectiveness and a critical look at its history:

https://pmc.ncbi.nlm.nih.gov/articles/PMC11487924/

2024. The Effectiveness of Applied Behavior Analysis Program Training on Enhancing Autistic Children's Emotional-Social Skills. By Du G, Guo Y, Xu W, in BMC Psychology. DOI: 10.1186/s40359-024-02045-5.

https://pmc.ncbi.nlm.nih.gov/articles/PMC9114057/ 

2022. Concerns About ABA-Based Intervention: An Evaluation and Recommendations. By Leaf JB, Cihon JH, Leaf R, McEachin J, Liu N, Russell N, Unumb L, Shapiro S, Khosrowshahi D., in Journal of Autism and Developmental Disorders, DOI: 10.1007/s10803-021-05200-8. 

Rain Man is a 1988 feature film in which a main character represents as an autistic savant and was reportedly based on real-life people the writer had met.

We take a moment to remind you that while this is a medical discussion, it is not providing a diagnosis or treatment or any medical advice. The only way to get a diagnosis, treatment or medical advice for your particular condition is through a discussion with your doctor.

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Visit www.thesavvypatient.com/podcast for episode transcripts.

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Get your copy of The Hormone Loop by Dr. Gillian Goddard wherever books are sold.

This episode was produced and edited by Erin Stein. Music: “All We Live For (instrumental)” by Wolfclub licensed through Audiio.com. Intro and outro edited, and video created, by Ian Mayer. The Savvy Patient logo by Amanda Spielman.

TRANSCRIPT

Erin Stein: Hello everyone and welcome to The Savvy Patient.

Gillian Goddard: Hello. Today's a fun day here at The Savvy Patient. We have our first guest.

Erin Stein: Our very, very first guest. It's a very special day because we don't have to do all of the talking. Why don't you tell us who our special guest is, since you know this person a little bit better than I do?

Gillian Goddard: A little bit. The special guest is Stephanie Mueller, and she is going to talk with us all about autism spectrum disorder and some of the particular treatment modalities around that. But what makes her extra special is she's my baby sister. Stephanie, please introduce yourself.

Erin Stein: Tell us how fancy you are, Stephanie!

Gillian Goddard: Exactly. All your cred.

Stephanie Mueller: Well, thank you. Yes. I am Stephanie. I am a board-certified behavior analyst, often referred to as a BCBA for short. I specialize in autism spectrum disorders. I've been working in the autism field for almost 20 years now. I started in 2008 and I have been a practicing BCBA since 2013. And that's me.

Erin Stein: You're like, “twenty years.” I met Stephanie when she was a child and sharing a bedroom with Gillian and there were dolls and stuffed animals involved. So, it's amazing. She's so fancy and professional. 

Gillian Goddard: That's right. Yeah. Yep. I know. I know.

Stephanie Mueller: Yes. Yes. It's a little wild.

Gillian Goddard: Time does pass. So why don't you explain to us a little bit about exactly what autism spectrum disorder is? Because I think people have a little bit of an idea…

Erin Stein: People have ideas and I think most of them are probably inaccurate and or really outdated. So, I would love you to define it as we currently define it and maybe you can also talk a little bit about how we used to talk about it.

Stephanie Mueller: Autism spectrum disorders are just that. It's a spectrum. And so, I think a lot of times people have a concept of one particular thing, maybe that they've seen, maybe they've seen it represented in the media in a certain way, or they know maybe one person who has autism. But the really important part to recognize is the spectrum of it. You're going to see individuals with widely varying symptoms, and they all still fall under that larger umbrella. That being said, autism is a neurodevelopmental disorder. It is, as far as we know, to this point, present from birth. It's not something that is caused by environmental factors necessarily or things like that. Present from birth. Symptoms fall into a few main categories. So, we're looking for communication and social deficits, and then we're looking for restricted and repetitive behaviors. Those are kind of the two main diagnostic criteria that are being looked at when we're diagnosing autism.

Gillian Goddard: We used to talk about autism and then we talked about Asperger’s syndrome. Can you talk a little bit about why we don't do that anymore. We call it all one thing and kind of why that change was made and what it means.

Stephanie Mueller: Yes, exactly. We do not have Asperger’s syndrome anymore officially, when the DSM, [Diagnostic and Statistical Manual of Mental Disorders] which is what is used to diagnose individuals with a wide variety of different psychiatric disorders. So, when that was updated in 2013, I believe, to the newest edition, they removed that Asperger's diagnosis and put everything under this autism spectrum kind of umbrella. The other thing that doesn't really get talked about as much is there was also a diagnosis called PDD NOS, which is “pervasive developmental disorder, not otherwise specified.” So, saying there's something going on here with your development. We're not going to say that it's autism, but there's something here. So, both of those categories went away, and now everything falls kind of under that autism umbrella. In terms of its helpfulness, it doesn’t actually change the diagnosis, but I think what it allowed is a wider access to treatment and to services for individuals. Because what we are seeing is a lot of funding sources are only funding treatment when you have that autism diagnosis. And so, if you had Asperger’s that treatment was not available to you, or if you had this PDD NOS diagnosis, that treatment was not available to you as well. So, it really did give a wider access to treatment and support.

Erin Stein: That's super interesting and a great behind the scenes reason that we usually don't hear about in the media when then we're talking about name changes and diagnostic changes. Because this is such a spectrum, maybe you can just give us a little window into how broad a spectrum because now everyone's talking about everyone being autistic and having autism traits and some people are severely impacted in their daily life and some people are not. I don't know if there are actually still any groupings within that spectrum or if we have done away with those as well.

Stephanie Mueller: That's a great question. So yes, the spectrum is very broad. So, you will have individuals who get an autism diagnosis, and they may not even seek treatment, or their parents may not seek treatment if they're, you know, a young kiddo. They might say, okay, there's a little quirk here or there, or things like that, but we can support them. Or maybe they got some speech therapy because they were a little bit delayed in their speech, but they're not seeking this sort of intensive treatment. And then all the way on the other side of the spectrum we have individuals who are going to need 24-7 support throughout their lifespan. And there actually is currently kind of a push within the autism field and with people who work with those more profoundly impacted individuals to separate that out into its own diagnosis of profound autism because it does look so very different from what the other end of the spectrum looks like.

Erin Stein: Right.

Gillian Goddard: I know you've worked with some very profoundly affected individuals. When we say someone's profoundly affected, what does that look like as far as their functioning and their interaction with other people typically?

Stephanie Mueller: For those individuals that are on that more profound end of the spectrum, they are typically nonverbal, or they may have a few words or sounds that are recognizable to those who care for them. They may, potentially use sign language or have some sort of communication device, but not speaking, not having conversations, those types of things. They are also often not able to care for themselves in some of the most basic ways. So oftentimes not toilet trained, not showering themselves, brushing their teeth, those types of things. So, some of the very basics. And then a lot of times that also does co-occur with cognitive disabilities.

Erin Stein: I had a question, when they are at that end of the spectrum and so profoundly impacted, how often does it co-occur with other conditions, either cognitive or personality disorder, you know, how often is it part of a complex situation for that person medically?

Stephanie Mueller: I think quite often when we get to that end of the spectrum there are more co-occurring diagnoses, and I know with the push to have that profound autism as a separate diagnosis, part of that is that there is a cognitive disability as part of it. So, in that case we would be looking at that as part of like those criteria. So [then] it would be all those individuals.

Erin Stein: Right. The biology of autism, is it essentially a difference in your brain structure, your brain functioning? We talk about it like it's a disease or an illness and that to me is maybe not quite accurate. It's more, as you said, from birth, something structurally or functionally going on.

Stephanie Mueller: Yes, so I can't speak to the science behind that too much; I don't want to misrepresent anything.

Erin Stein: That's okay.

Stephanie Mueller: But yes, my understanding at this point and kind of what the research is showing is that there is something that is different about the brains of individuals with autism, the way that they're processing information and taking in the world around them. It's not a disease, it's not an illness, you're not going to catch it, and there's also no cure. So, it's not something that is necessarily going to go away, but with treatment and support, we can work to mitigate those symptoms that are most impactful.

Gillian Goddard: This is something that's a little bit hard for people to understand. And from what I understand, and I am not a neurobiologist by any stretch of the imagination, and I don't pretend to be one, but there's probably some interaction between a person's genes, and the way different genes get turned on and turned off—which is called epigenetics, which is a fairly new area of study that is probably at play here—and a lot of what goes on with epigenetics, it's not like the genes get turned on and turned off like today. This gene is turned on and tomorrow it's turned off. Although there are some situations like that when we're talking about neurodivergence. We're often talking about genes that are turned on or turned off before an individual is born and they may have even inherited the fact that a gene is turned on or turned off in a certain way genetically, from a parent. And these are complex interactions that we've barely scratched the surface in how all of this comes into play. It is almost certainly taking place at that level of different genes and the way they're turned on and turned off in concert with one another.

Stephanie Mueller: When we are working with new families, we are talking about family history, and you will oftentimes see that there is somewhere in the family history, whether it's parents, whether it's aunts or uncles, grandparents, or another sibling, there tends to be some either autism or other neurodivergence somewhere in that family line.

Gillian Goddard: Yeah, it reminds me a lot of ADHD in that way where sometimes a child is more profoundly affected and so they get a diagnosis and then retrospectively you go back and parents get diagnoses maybe because they weren't so profoundly affected and they grew up in a different time and I think you've seen that also.

Erin Stein: Certain other generations were told to just suck it up. Back to people feeling like this is something you get from other factors, perhaps. I think one question is when do you get diagnosed? Because some people children get diagnosed at a fairly young age, but they're not going to be diagnosed as infants, usually, I would guess, but people do get diagnoses later in life as well. So, is it because something changed or developed, or is it just that they finally started looking at some of these things in this more clinical way?

Stephanie Mueller: There are a few things that are going on. With the rise in autism awareness, you're seeing this earlier awareness. So, you might have parents who are watching really closely their child's development, even more so than in the past, and they're bringing it to their pediatrician earlier if they have questions or concerns.

Erin Stein: There's a perception that there's a rise in autism, that more people have it. My personal assessment is that just more people are being diagnosed because of a rise in awareness and a broadening of the diagnosis. But what's your perspective on that?

Stephanie Mueller: Yes, so I think that that's true. I think the broadening of the diagnosis, pulling everything in under that one umbrella, has definitely led to some of that increase in diagnoses. I think that awareness and again families kind of maybe advocating to get a diagnosis where in the past that really wasn't occurring. The other thing that you had mentioned about maybe people later in life getting a diagnosis and does that happen, or kind of what's going on there. But sometimes for individuals that maybe are not as impacted by their symptoms, in childhood, they can kind of get by. Maybe you know, they can make those social connections. It's a little bit easier in early childhood. You're not forming these real deep connections; it's pretty surface level. And then as they get older and things get more complex, those symptoms might become more apparent because now, you know, these social skills and what's being required is much more challenging. And so, they're having a harder time kind of keeping up. We do see that from time to time. This is just sort of my observation, but it can happen in females a lot. It can be missed in those early years. They're able to mask and get along okay. And then when we get to those adolescent years when things get really tricky, it gets harder to keep up.

Gillian Goddard: Again, it reminds me a lot of what happens with women who have ADHD who don't get diagnosed in childhood because they're not jumping off their desk at school, they're staring out the window daydreaming, and it's not until things get more difficult that they start to get picked up, right? Similarly, autism has historically disproportionately affected boys and men, correct?

Stephanie Mueller: Correct, yeah. It's about four to one males to females. So quite a bit more males are impacted, we think, at this point.

Erin Stein: Yeah, I was going to say, how many girls were not diagnosed? So, I would assume that's based on more current numbers. But we didn't talk about autism in the olden days, with a lot of these things, we didn't call what was happening if someone was developmentally delayed; they were just different and no matter what was happening with them, whether it was autism or a variety of other things that someone could be dealing with, they weren't going to a doctor and getting a diagnosis explaining what that was. You know, the family was either just taking care of them at home or putting them in an institution, which was not a great time for people.

Gillian Goddard: Yeah, I think yeah, I think institutionalization was kind of the answer for the more severely affected.

Stephanie Mueller:  Yes.

Erin Stein: Yes, and then at some point we finally started identifying this and talking about it and separating it out as its own specific condition. And I think that is also part of why some people have this perception that it's suddenly new, there are suddenly more people with it, and we just didn't have a name for it for a long time. I would guess that people have always been on the autism spectrum, throughout history.

Stephanie Mueller: I would definitely say so. I would agree with that, and I think what you're hitting on is exactly right. Like with that push to end sort of institutionalization, then we see these individuals being brought more into the mainstream. Now they're going to our mainstream schools and they're in the home environment with their families and they're not out of sight, out of mind anymore. And so that's where I think this push to recognize that diagnosis and find effective treatment really starts to be a bigger push.

Gillian Goddard: I'm just going to ask this question and I know the answer, but I feel like in a conversation like this it's important to state it. Do vaccines cause autism?

Stephanie Mueller: No, they do not. They absolutely do not.

Gillian Goddard: Thank you.

Stephanie Mueller: I know you know this, that came from an article that was published many, many years ago that was found to be fraudulent. The data was made up, essentially, and that article has been redacted; there is no truth behind it.

Gillian Goddard: And it's been studied again and again and again since then. And again.

Erin Stein: And again, yes, I think people miss that. That they did say, okay, fine, we'll study it. And they did, and there's no evidence to support that at all.

Gillian Goddard: And they found no connection. That's correct.

Erin Stein: That's so important what you said at the very beginning, Stephanie, that as far as we know, it's from birth. For parents especially, there's a lot of fear and guilt, and that's where I assume psychologically what is driving a lot of this anti-vaccine rhetoric because they feel like it's a solution, it's something they can control, it's something they as a parent can then protect their child from if that's what causes it. And even with friends who have children dealing with a diagnosis like this, they feel like they did something wrong. Like that somehow, it's their fault that their child is affected and going through this. And it's not. It's just biology. It's just how your wonderful child arrived. And we have to learn to accept individuals where they're at, which is really hard. It doesn't take away any of the concern and worry you have as a parent of them moving through life with this challenge; and depending on the level of care you need to provide to them and how best to do that, that's really, really hard. And I don't mean to dismiss it, but it's not your fault. And it's not something you can prevent as a parent, right? I think we need to release parents from that burden. This is not something you can control, that you can prevent, that you can change their diet or not give them vaccines and then you'll protect them from this. That's not how it works. It's just not.

Gillian Goddard: So, let's then turn our attention toward managing symptoms. 

Erin Stein: What you can do.

Gillian Goddard: Right, exactly. Exactly. What you can do to support a person and help them with the symptoms that are impacting them and impacting their functioning. Can you give us first a broad overview of what kinds of modalities are used and then I want you to drill into your area of expertise.

Stephanie Mueller: Mm-hmm.

Erin Stein: Well, can we make her start earlier first? Because we do have probably a lot of parents listening, a lot of moms, you know, what are some behavioral signs that you can keep an eye out in your children to know if you should get them evaluated to see if there's some support or treatment you could be getting for them?

Stephanie Mueller: The biggest thing to keep an eye out for is meeting those developmental milestones. Are they sitting up, crawling, walking, talking, as they should be, or are they falling behind? And if you notice that they are consistently falling behind, then that's a good time to talk to your pediatrician and potentially seek out a diagnosis and if you have concerns, and I know this goes right in line with what you guys always talk about, but if you have concerns, talk to your doctor, advocate for it yourself. A lot of times there are doctors out there who will say, like, well, every child develops at their own rate.

Gillian Goddard: Which is on some level true and also there's a spectrum of what's typical.

Erin Stein: Yes.

Stephanie Mueller: Yes, and so I always tell parents, if you have concerns, you know your child best and you're their best advocate. So, continue to seek out that support and talk to your doctor.

Gillian Goddard: Assessing these milestones is really what your well child visit is all about. But obviously you don't have to wait for a well child visit if you have concerns, especially once you get past that first year of life when it feels like you go for a well child visit every five minutes. Once you get past that first year of life, when you might start to notice things like delayed speech, that kind of thing, oftentimes that coincides with when you're not going to the pediatrician for a well child visit every five minutes. And so, you don't have to wait for a well child visit to address your concerns with your doctor.

Erin Stein: Stephanie, because you mentioned adolescence, I'm curious if there are things parents of teenagers or preteens could look for that's a signal that maybe their kid needs some extra support. That's really interesting that you might be coping, right? Like with ADHD, figuring out ways to cope and then suddenly there's too much to cope with and then they need support.

Stephanie Mueller: A big thing to look out for is changes in their social relationships. Maybe not being able to maintain friends, maybe they're kind of changing friend groups regularly, things like that, where they're just struggling to kind of fit in a little bit more. Because again now those social expectations have kind of exceeded their capacity. And so, there's that struggle to find that right fit.

Gillian Goddard: I feel like that sounds like adolescence generally.

Erin Stein: It's like when we talk about all perimenopause symptoms, it's like, that's also the symptoms of everything.

Gillian Goddard: Right. As the mother of four kids between the ages of nineteen and ten, I'm like, so that sounds like every kid in middle school, my goodness.

Stephanie Mueller: I would say maybe to a little bit greater degree than your typical middle schooler.

Gillian Goddard: Fair enough.

Stephanie Mueller: That can be hard to recognize if it's your first child, right? And this is your only experience. So that can be hard to know. Like, is this a problem? Is it not? Is this typical? And I think that that's where it's always good to just advocate if you're like, I don't know, they're having a tough time. I'm worried something's wrong. It never hurts to seek out help.

Gillian Goddard. Exactly.

Erin Stein: Especially for first moms, 'cause I've seen it in people around me, just talk to other moms too. Just be like, “My kid's doing this” and a lot of times the other mom will be like, my god, I know. I have a friend who has three kids, so anytime I mention something to her that my niece is doing who's an only child, she's like, yeah, one of my kids did that and then the other one did this and you get a little more context, right? For what is a typical experience for a kid at a certain age.

Gillian Goddard: I also think that if you're concerned about a kid because of social struggles in adolescence, regardless of why they're struggling, it's never going to be a bad thing to get some support.

Erin Stein: True. True.

Gillian Goddard: Let's talk a little bit about managing symptoms. 

Erin Stein: Modalities. 

Gillian Goddard: Yes, you liked that word, didn't you?

Erin Stein: I did. So clinical.

Gillian Goddard: Sorry.

Stephanie Mueller: So, there are a variety of treatment options for individuals on the spectrum that are going to look at slightly different aspects or different symptoms. So, there's occupational therapy, physical therapy, speech therapy, and then ABA or behavioral therapy. And there is some amount of overlap between all of them, and they can all also work together for really great comprehensive wraparound services, but they do have slightly different specialties. So obviously, you know, your speech therapist is going to be focused on communication and speech if there's you know articulation challenges or things like that, up to working on conversations and things like that. Your occupational therapist is focused on more of those, independent living tasks and being able to physically complete those tasks. They might work on feeding or toothbrushing, handwriting a lot of the times, those types of things. And then a physical therapist is more often going to come into the mix if there are real physical deficits that have been identified. So maybe they were late to walk and needed support with that or toe walking is another area where you may see a physical therapist get involved.

Erin Stein: What's toe walking?

Gillian Goddard: Come over to my house.

Stephanie Mueller: Yes, so just walking on your tiptoes. It's pretty common in autism. Not everyone, so again I think that's one of those misconceptions, like, “they're a toe walker, they have autism,” or “they don't walk on their toes, so they couldn't have autism.”

Erin Stein: Well yeah, I gotta bring my husband in, apparently.

Gillian Goddard: Yes, and all almost all the men and boys in my house. I'm like, hello, just come over here. I'll show you some good toe walking.

Stephanie Mueller: Ha ha ha.

Gillian Goddard: so, tell us about behavioral therapy and what exactly that looks like and what it looks like in autism spectrum disorder and then I want to talk about what it might look like in other areas.

Stephanie Mueller: Yeah, so behavioral therapy really is kind of the gold standard for autism treatment. It is based off of the science of how organisms learn, and I say organisms because it's not just people; animals and all kinds of creatures, we learn and respond in a lot of the same ways. So, it's based off of that science and harnessing those things that we know about how we learn effectively to treat socially significant behaviors. And that socially significant part is really important because I think that there can be a misconception that ABA or behavioral therapy is looking to take away all autism symptoms or it's looking to make a child into a robot—things like that, and that's not the goal. We're not looking to take away the things that make someone an individual. It's those socially significant things. So, if they are having a difficult time with communicating, with socializing, with completing daily tasks, those are the things that behavioral therapy should target. And a lot of that is done through positive reinforcement. So, we want to identify those behaviors that we want to see and then we want to reinforce them as much as we can so that they keep happening. That's the main goal. You asked a little bit about what it looks like and I want to spend some time there because I think that's really important because again there's this misconception, especially right now. ABA is going through a bit of a tough time. 

Gillian Goddard: Like all science-backed treatments, anything evidence based is having a rough time.

Stephanie Mueller: It's having a tough time. I can understand why. So there have been some autism self-advocates who received ABA as children. They have grown up and said, you know, hey, what happened to me, it wasn't okay. It felt abusive, it felt traumatic, and I never want to take away from anybody's experience at all, but that's not the way that it should be. And I think as a field, as a science, there are some things that we have to answer for. Like in in the early days, you know, it was very punishment focused and use of aversive stimuli as opposed to more of these positive things, but the field continues to move further and further away from that. And so, what it should look like is something that's very positive and supportive. And if you've got littles that are doing APA therapy, it should look like fun and play with all of this good learning mixed in as naturally as possible. It should be something that your child is excited to participate in, which can sound kind of crazy when you're talking about a therapy, and some kiddos are receiving up to 25 or more hours per week of therapy. But they should be excited. They shouldn't be dreading their therapist coming to the door or walking into the clinic, whatever setting they're getting their treatment in, and it should be really collaborative with the families. Your therapist should be asking you what goals are important to you as a parent, what you want to work on, and helping you to learn the strategies that you can use outside of that session time so that eventually we can work our way out of a job and your kiddo is good to go and you feel confident to support them.

Gillian Goddard: Describe what a goal might be and how you would design a plan to help a kid meet that goal. Just an example.

Stephanie Mueller: Sure. So again, that's going to vary quite a lot, depending on the kiddo, but something so like in early intervention, we work a lot on communication. Communication is the key to also reducing a lot of challenging behaviors. So sometimes we see that's where families are really struggling. “We're having all these, you know, challenging behaviors, meltdowns, tantrums, you know, we need help with that.” But our kiddo maybe is minimally verbal and they're not able to let us know what they want or tell us when they're frustrated. So, something that we work on a lot, especially with our younger kiddos, but really anyone who comes in who potentially doesn't have this skill is what's called functional communication. We want you to be able to say, “I need a break.” “Stop, I need help,” any of those things that maybe your lack of communication is causing that frustration, right? So, example, “I need a break.” Again, with our little kiddos, it could be in play. We're playing, maybe it's not their most preferred activity, and so we start to notice signs of frustration, and we immediately prompt them and say, “hey, if you don't want to do this anymore, you can let me know you need a break.” And if they're verbal, they can say, “I need a break.” If they're not, we might teach them to use a card and it might say, I need a break, and they just have to point to it or they hand it to you or something like that. Some sort of communication to interrupt that cycle of “I don't want to do this anymore, so I'm going to get frustrated.” That is super important and it's also teaching those early self-advocacy skills. Being able to say, like, I am an active participant in this, and I can say when I need a break, when I need to stop, when I need help, all of those things.

Gillian Goddard: And I assume that the positive reinforcement in that case is that they get a break.

Stephanie Mueller: Exactly. So that is it is exactly right.

Erin Stein: You hear positive reinforcement and I'm like, do we give them a piece of candy every time?

Gillian Goddard: Right.

Stephanie Mueller: I'm actually going to hit on something here that Is very important. So, in this case, it is reinforcement. It's actually not positive reinforcement. This is negative reinforcement, which is not to be confused with punishment. Because what we're doing here is we're taking away, so now they're like, I don't want to do this activity anymore, whether it's play, whether it's math, homework, whatever it is. They're like, I'm done with this. We're taking it away. We're removing that aversive thing. That's the negative part, removing. And by doing that, we want to see that behavior of requesting, saying, “I need a break,” increase in the future. That's the reinforcement part. So, this is negative reinforcement, but yes, reinforcement is not always candy and treats and iPad time and all of those things. We want to, when we can, we want to hit on those natural reinforcers as much as we can.

Gillian Goddard: Mm-hmm. Can you talk a little bit about the difference between reinforcement and bribery?

Stephanie Mueller: Yes.

Gillian Goddard: People use these terms very interchangeably and the difference is really important because one's effective and one is not.

Stephanie Mueller: It's a subtle difference, and so I can understand the confusion. And I think a lot of times parents who are hearing about reinforcement are like, okay, I have to give my kids something for doing something that they should already be doing, that feels like bribery. The difference is reinforcement is set up beforehand. So, if know that going into the grocery store is really challenging for my kiddo, I'm to say ahead of time, hey, if you do a good job in the grocery store, you can get a treat at checkout. Now again doesn't always have to be treats but…

Erin Stein: You can get a banana.

Gillian Goddard: Ha!

Stephanie Mueller: For this example, you can get a banana.

Gillian Goddard: Well, it does have to be an incentive toward behavior. I would behave badly if the banana was what was on offer.

Erin Stein: Maybe it’s their favorite food!

Stephanie Mueller: Yes. So, it has to be something that they like. Yes. And I use that a lot as an example as well. Like candy for me, yes, I will behave for that. But if you're giving me a peanut butter cup, I will not because I'm allergic to peanut butter. So that's not going to do it for me. Understanding what works for your child and for yourself, is important. So back to the grocery store. So, we've set up, we talk to our kiddo beforehand, we let them know if you meet these expectations, so, if you stay with the cart, you keep your shoes on, and you help me put some things in the cart, then you get a banana, which is their favorite food, at checkout. With bribery, what's happening is you're not setting any of these expectations from the beginning. You're going in, your fingers crossed, they're going to do well today, even though it never goes well, but it's going to happen today. And you get into the store and they're running around, they're kicking their shoes off, they're all over the place, you can't find them, and you go, all right, if you get over here, put your shoes on, stay with the cart, I will get you your banana right now. And so now what's happening is they're getting this thing that they previously were not going to get until they behaved poorly. So, there was no promise of getting this preferred thing going into the store. The bad behavior happened, and now, you can get your favorite thing. So, what we've really done is positively reinforce that bad behavior. Because now they know, ooh, if I want this, I'm going to behave badly because that worked last time and I'm going to do it again. Whereas in the first example where we were talking about reinforcement, they received that reinforcement for doing the right things from the beginning.

Erin Stein: This is fun. This is just getting into behavioral psychology, like teaching patience, delayed gratification, the whole marshmallow test of it all, like can you wait and then you get two marshmallows or can you not wait and have one marshmallow now? This applies to all children—

Gillian Goddard: It doesn't apply [just] to all children. It applies to all of us. 

Erin Stein: Fine, all humans.

Stephanie Mueller: Yes.

Gillian Goddard: And that is, I think, my favorite part of behavioral therapy, is it works for everyone.

Erin Stein: the timing is a big part of it. If you know, anyone who has a tantrum and you give them the thing right away to get the tantrum to end, that's a bad idea. Then you're just reinforcing the tantrum 'cause they then they got what they wanted.

Stephanie Mueller: Mm-hmm. The reason though that parents do that is because it reinforces the parents' behavior, right? So now we have negative reinforcement on the parent side. I gave you this thing, you stopped crying. That aversive stimulus to me went away. So, in the future, when you're acting out, I know that this is going to work to solve my problem. And so that's why parents get stuck in that loop. And I will say, even as a behavior analyst, even knowing all of these things, it still happens sometimes. Your kids still get one over on you and you get stuck there, but it's like, yep, I know I'm reinforcing my behavior and I'm reinforcing a bad behavior for you, and we will work on that, but for right now I need this to stop.

Erin Stein: We left out the part that Stephanie is also a mother and has a bunch of little ones running around.

Stephanie Mueller: Yes.

Erin Stein: I think that's so interesting to go back to where you said ABA is having some negative publicity, let's say. I think there's two things there. One, no matter what support or treatment or therapy you're getting it has to be a good therapist. It has to be a good professional. So, like you said, if the kiddo or family member doesn't want to go, that might be a sign the therapist is not great.

Gillian Goddard: Not a good fit.

Erin Stein: Unfortunately, the reality is not all therapists are great. And I can certainly see in the past people being more punishing, trying to control how these patients are behaving and thinking they need to conform in order to function because that's how our whole society is set up. You must conform to function. I mean, that's again the ADHD, the neurodivergent, the whole conversation is “everyone needs to fit in this box.” And if you don't, it's bad. And we're slowly ripping that apart finally, but the example you gave is empowering the child to learn how to advocate for themselves what they want to happen. 

Gillian Goddard: Yeah, to express their needs.

Stephanie Mueller: It's super important. And I always stress to parents that should be some of the first goals that are being targeted. And if they're not, that might be a red flag for you that maybe this maybe this provider is not going to be the right fit for you or your child. but we should be looking at that empowerment both for the child, and for the parents. We're not looking for compliance, and I think that's a big shift. In the field, in the past there was this more compliance-based approach. “You're going to sit here, you're going to work on the things that I'm telling you to work on, and you're going to do it until I tell you that you're done.” It should not look like that. There should be a good back and forth between therapist and client. Even at the youngest age, if you have a two-year-old, you can be working on these functional communication skills and teaching them that they have a voice and that they can get their needs met, for sure.

Gillian Goddard: Absolutely. So, we can all benefit from—

Erin Stein: Bribing ourselves with bananas. [laughter]

Gillian Goddard: Setting up positive reinforcement. I guess my question is does behavioral therapy only work for people with autism spectrum disorder?

Stephanie Mueller: No, it does not only work for people with autism spectrum disorder. Like I said when we were kind of talking about what ABA is, where it came from, it's based on the science of how all organisms learn. That's all people, not just people with autism spectrum disorder. An example that I always give is I get my paycheck every two weeks, and if that paycheck stops coming, I'm probably less likely to keep working. And that's a system that we pretty much all live by in our society, those of us who are working. That's a behavioral contingency. You work; you get paid.

Gillian Goddard: I don't know that the federal government understands that concept. Having gone to the airport during the TSA shutdown, I think this is something that our legislators could understand a little bit better. Shocking.

Stephanie Mueller: Yes, but then you see lots of people stopped working. They weren't getting paid anymore. That reinforcement was gone. And so, the behavior stopped. That's a very basic example that we all live by that I think a lot of people can relate to. Personally, in my own life, I use this all the time. so that's called self-management, right? Like I can manage usually my own behaviors. For the most part, I can do it myself, and that's our goal for our clients as well, is that they're able to learn these strategies so that again, they don't need somebody telling them, hey, you're going to get this banana after the grocery store. Eventually they're going to grow up and they're going to be able to manage that behavior. 

Gillian Goddard: And not take their shoes off in the grocery store anymore.

Stephanie Mueller: Yes. For me, there's a lot of okay, I have this really hard task to do today, or this task that I don't find intrinsically motivating. The task itself is not reinforcing. Maybe I need to call an insurance company or something like that. So, I might set up like, ooh, okay, I have to do this, but after that, then I get to take a 10-minute break and go for a walk, and it's really nice outside today, and I like doing that. So, I can set up that reinforcement for myself. The challenge, of course, becomes you're the one who's in charge of it. So, it's up to you to stick to it. And there's no one holding you to that but yourself.

Gillian Goddard: I wrote an entire book that way because for me I wanted to write the book, I wanted the end product, but the process of writing it was really difficult. I'm a very social person, and it involved me sitting for many, many hours at my computer by myself to be able to sort of think through and produce a cohesive manuscript. And I set timers and took breaks like every forty-five minutes, and I always made the break about doing something social. 

Erin Stein: A lot of writers do that, you know.

Gillian Goddard: They're using applied behavioral analysis to get there.

Erin Stein: Yes, yes. Because it is, it's a struggle. Unless you benefit from hyper focus, you struggle to sit there and force yourself to do it. I mean I do, that's why I've lots of ideas and I've lots of starts and then I move on to organizing my closet or something.

Gillian Goddard: Right. Yeah.

Erin Stein: Everyone, buy The Hormone Loop. It's out now.

Gillian Goddard: Yes, so I always say that I get the best parenting advice from Stephanie because when I'm dealing with something that my kid is doing, and this is less true now that they're bigger and more true when they were little, you know when somebody was stalling at bedtime, she would really sit down and think about like, well, why are they stalling? What do they want? They want to spend more time with you, or they love reading books and so they want more time reading books or whatever. And help me put together this whole system to reinforce the behavior that I wanted by rewarding them with what they were really trying to get from procrastinating going to sleep, for example.

Stephanie Mueller: Yeah, so and that's super important and I think especially as parents, you can forget to think about it in the moment, but sometimes your child's behavior doesn't necessarily match up with what it is that they're actually expressing or needing or wanting and so really getting at we call it the function of the behavior, so why they're behaving that way. And if your response meets that need, then you're going to increase that behavior. And your response could meet that need in a positive way or in a negative way. So, if they're acting out at bedtime because they feel like they didn't get enough time with you during the day and they're not ready to go to bed, and they know that screaming and crying gets you to engage with them and gets them that it delays bedtime, and now they've got more time with you. Even though it's through screaming and crying, they're going to continue to do that because it's working for them. And so, you can kind of flip that on its head and say, okay, well I know that they're going to want time with me. They're not they're not ready for bed. So, it may not meet my goal immediately of getting them to bed at exactly this time. But set aside an extra 10 or 15 minutes and we can talk through the day, and we can have a nice conversation and connect in that way and then they'll go to bed without that screaming and crying. So really getting at the function of why they're engaging in that behavior, because behavior can look one way, it can look like screaming and crying, but it can actually serve a variety of different functions and so getting at the heart of that is really important.

Gillian Goddard: As we're talking about applying these things to, all children, or you can apply these things by the way to the other people in your house who are not children…

Erin Stein: I know, what about our husbands?

Stephanie Mueller: Ha ha ha!

Gillian Goddard: Stephanie, what about our husbands?

Stephanie Mueller: Positive reinforcement and again that that doesn't have to be tangibles; you don't have you don't have to give them a treat. But you can say like, hey, thanks for doing that. I noticed that you made the bed today. Thank you. And then that might be enough for them to be like, I liked that. I liked that little interaction. I'm going to do that more in the future. So just little things like that can have a big impact.

Gillian Goddard: Can you talk a little bit about extinction bursts?

Stephanie Mueller: Yes. extinction bursts are tricky because it feels like you're doing something wrong. 

Gillian Goddard: Tell people what they are.

Erin Stein: Well, hold on, what is an extinction burst?

Stephanie Mueller: Yes. So, an extinction burst is when a behavior that was being reinforced in some way is no longer getting that reinforcement. And so, the behavior, the intensity, the duration, all of those things can increase. So, the behavior gets worse, and that's where it can feel like you're doing something wrong. You're like, my kiddo’s yelling and screaming at bedtime and I am ignoring them, I'm not engaging with them, and now it's getting worse. Like why are they still doing this? Because what's happening is the individual engaging in the behavior, like, hey, this used to work for me and it's not, I probably need to do it harder or louder or longer, and then they're going to respond to me. More of an everyday example, if you're knocking on a door and you're like, okay, I knocked. And usually somebody answers and they didn't answer, so you're like, okay, I'm going to knock again. No, nobody's answering. I'm going to knock louder. They probably didn't hear me. Okay, I'm going to knock longer this time. and I'm going to ring the doorbell. And then finally you're like, they're not coming. Now my behavior is going to decrease and I'm going to walk away. and so that's kind of that burst, right? The behavior increased in intensity, duration, and then it didn't get reinforced, and so then it goes away. I do this [gestures upward] because I always picture it on a graph. Where you can see the behavior increasing, going up, and then there's this sharp drop off where it's like, okay, that new contingency has been understood, this is not going to get me that reinforcement anymore. I need to engage in this new behavior. y

Erin Stein: It's like a last hurrah. Like “I'm going to give this a really big try.” One more big try. Yeah.

Stephanie Mueller: Yes.

Gillian Goddard: Really good go.

Stephanie Mueller: Yes, exactly. But where you can get into trouble, and again, as a parent, I'm not going to say I've never reinforced an extinction burst because I have.

Erin Stein: Ha ha ha.

Gillian Goddard: We all have.

Stephanie Mueller: Sometimes, they have a little bit more oomph, that last hurrah, like, I'm really going to get this, and you just can't take it anymore, right? Like I cannot take the screaming or the yelling or the pounding or whatever is happening, and you give in. So now what we've done is taught them not that they're their baseline level that they were doing before, but now this new higher intensity level is the thing that works. And so essentially, we've taught [them], don't do what you were doing before. Do this new, louder, bigger, longer thing, and that's what's going to get you reinforced. So, if you are changing up those contingencies, you're putting something on extinction. Be prepared and be strong. Because or if you're like, I know I don't have it in me today, then reinforce it in the beginning. Because then you're not teaching that that, like, now you have to do this bigger thing. You're just going to reinforce it in the beginning. No harm, no foul, you're right where you started. But if we are teaching also those functional communication strategies and we've looked at the function of the behavior and all of those things, and we've set up our new system to meet those needs, our extinction bursts should be minimized. Not to say that they don't still happen, they do. But we should be able to minimize that.

Erin Stein: I wanted to just circle back to autism and ask if there are any other stereotypes and misconceptions that you want to make sure you debunk, you know, besides our little vaccine conversation.

Stephanie Mueller: I think there's a few things. And they're things that people often say to me when I tell them I work with people with autism. Usually, the people that that say this one are maybe a little bit older, but they think of like Rain Man. And so, “do they have a special skill?” or they're really good at, counting things or knowing the calendar or have that kind of savant skill. That is not common. I think I've met in my 20-year career one individual who did have that savant like skill.

Erin Stein: It is a Rain Man-type quality, but it is also a stereotype that there is some sort of cognitive deficit, which is not true in the vast majority of the spectrum, right? The things they are struggling with have nothing to do with their intelligence. And I think that can be a negative stereotype as well.

Stephanie Mueller: Yeah. Yeah, definitely. I think that that is true. And the other one that I was thinking of is people often think that people with autism, they are rocking back and forth and they're flapping their hands and they're doing these things that are really overt and noticeable. And some are, but many are not, and that can be a common misconception as well.

Erin Stein: Yeah, the message is really, just like human beings in general, there are 80 million ways it could present itself and you are just an individual, no matter whether you have this diagnosis or not. And there are some behaviors you might have, there are some behaviors you might not. You might need support, you might not. It is, as all things, an individual condition, and that is why it's so hard to talk about and it's so important to push back on these broad statements about anyone of any diagnosis.

Gillian Goddard: One hundred percent. Stephanie, thank you so much for joining us today. if people want to learn more about you and your work, where can they find you?

Stephanie Mueller: You can find me on Instagram. It's @stephanie_mueller_bcba or if you have questions about anything we talked about or otherwise, you can also email me. It's stephaniemuellerbcba@gmail.com.

Gillian Goddard: Thanks so much.

Stephanie Mueller: Thank you.

Erin Stein: And of course, you can let us know if you want to hear more about any piece of it, if you want to share your experience. I just want to end with saying there's nothing wrong with being autistic or having autism, however you prefer to describe yourself. It's just another version of being a human. Right?

Stephanie Mueller: I love that. Absolutely.