#062: Social Media Ethics & Applied Behavior Analysis: Interview with Dr. Amanda Kelly

social media ethics

Last year, I had the pleasure of interviewing Dr. Amanda Kelly, AKA: Behavior Babe, on my podcast, and now I’ve been lucky enough to interview her again. Dr. Kelly is a BCBA and is an autism ethics expert, so that’s what we’re going to be focusing on today. In this interview, Dr. Kelly gives her opinion on hot topics such as: does it go against the code to accept gifts from parents? How does one remain sensitive to cultural differences? And the basics of social media ethics.

Dr. Kelly is one of the biggest autism advocates out there. She lives in Hawaii and is constantly fighting to provide the people with free resources and responsible services. 

Finally, Dr. Kelly also speaks about her time as a special education consultant and how her internet persona, Behavior Babe, was created.

Did today’s episode give you something to think about? Do you have a question for me, or a topic you would like to see covered in the future? Email me at [email protected]!

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Transcript

Mary Barbera: Welcome back to another episode of the Turn Autism Around podcast. I’m your host, Dr. Mary Barbera, and today’s podcast is an ethical interview with Dr. Amanda Kelly; who is known as Behavior Babe. And Dr. Kelly and I have been friends for many years, for over a decade. She has a PhD and she is a doctoral-prepared BCBA. She lives in Hawaii and she’s a big advocate as well as a behavior analyst and she’s all over social media. So if you haven’t heard of her, definitely you want to check her out. And I hope you listen to her insights about ethical considerations in the field.

Welcome to the Turn Autism Around podcast for both parents and professionals in the autism world who want to turn things around, be less stressed, and lead happier lives. And now your host, autism mom, behavior analyst, and bestselling author, Dr. Mary Barbera.

Mary Barbera: So I talked about it in the introduction about your experience and your education in the field of ABA, but how did you specifically become more of an expert on the topic of ethics? Or how did you get involved with focusing on ethics?

Dr. Amanda Kelly: That’s a great question. I mean, our environment shapes us, always. And that’s a tenant of behavior analysis. One of the underlining aspects of it, and I fell into the behavior analysis in general. From meeting a child with autism when I was studying for my elementary undergrad in elementary education; and I went and worked with his family and met his family, and I didn’t know what ABA was or who Lovaas was, or what autism was, and they didn’t either. They were a really wonderful family and we decided to pursue that journey together. And it has been quite the experience for them, and for me.

Dr. Amanda Kelly: And then after graduating, I moved to Massachusetts to pursue a degree in behavior analysis, to try to find work in ABA and in education. I wanted to learn more about intervention or a technology that had been effective at teaching this child to talk and to be integrated with his peers without any support when he went into kindergarten. So three years of services. But then ethics, you know, again, we’re shaped by our environment. It’s been through the situations that I’ve encountered. I’ve worked in public school settings, I’ve worked in home situations and it’s important to, you know, maintain a separation of a relationship from a professional aspect in maintaining objectivity, but not in a way that we’re so isolated or cold that we can’t be received by our consumers or by the families with whom we’re working or with the teachers with whom I was consulting.

Dr. Amanda Kelly: Unfortunately, or fortunately, I suppose, I’ve been asked to do a lot of unethical things; or I’ve been placed in situations that have made me question whether or not it was the right thing to do. And some of those things had been I think sometimes simple and naive on the part of my boss or the person asking, you know, Hey, can you, can you just hurry up and get this assessment done? And I’d say, sure, where’s the parental consent? Oh, well we don’t have that, but you know, they’re a kid in our school and we need to help the teacher so we need to do it anyhow. And I had to kind of look into, you know, is that what we should be doing, what additional protections need to be put in place, and what would be the harm to the client. In a human service field, you know, and in a field where we’re dedicated to helping families, children’s teacher, the community, it’s really important that I do what’s in the best interest of the client and that I make sure that my actions aren’t ever putting them in harm’s way.

Mary Barbera: Right. So I know you published at least one paper called Blurred Lines in 2014 and can you tell me and tell the listeners about the process, why you wanted to publish that, what it entailed, who was involved and what the findings for?

Dr. Amanda Kelly: Absolutely. So it was in 2015. And we published that and behavior analysis in practice with Dr. Megan Miller, who is one of the other experts interviewed, as well as Patrick O’Leary was our primary author. And Missy Olive, Dr. Olive. And it really came together through an online platform. So there are advantages to social media, of course as Behavior Babe. I’ll say that to everybody who will listen. And you know, there are things that we need to learn how to navigate, and we’re not going to figure that out by avoiding the conversations. And so Patrick reached out and said, you know, I know you guys are active and we’ve had a lot of discussions online. How about we go and try to formalize some of the thought process for other people who are going through this and give them some formula?

Dr. Amanda Kelly: And so what we did, we looked at our own ethical code, the behavior analyst certification boards, and ethical guidelines. And we also looked at the ethical code for the American medical association. So for physicians, we looked up you know, counseling and we looked up psychology; and what we found were boards that were, or ethical codes that had been revised more recently, all had some aspect of social media brought into there and consideration for it. The ones that didn’t, it appeared to be that their commonality was that their codes had not been revised in some time. So we anticipate that once they’re revised, they will have some additional consideration for ethical behavior online.

Dr. Amanda Kelly: We used the title Blurred Lines. It was a popular song at the time. I like to get people to dance during my presentations, but also because it really does paint a picture of ethics. You know, I think about walking a tight rope a lot of the time we want to have that fine balance and that delicate balance and it can get really blurry, you know, and you have kind of maintain focus on what that path is. And we acknowledge that people are going to make mistakes. And what I don’t want someone to do is to never engage in online behavior again, because the same challenges online are going to be found in our day to day world. I think they just get magnified because we can increase the group in which we’re speaking to in an online situation. So the risks become more amplified in that way. But I think the benefits can, too.

Dr. Amanda Kelly: And so we talked about some of those benefits of, you know, coming across generations, geographical locations. I’m literally living on an Island in the middle of the Pacific ocean and I’m able to have this dialogue with you, Mary. And with the authors of that paper. We did look at the benefits and we looked at some ways in which people can protect themselves and that involved things like having a separate public and personal page; making disclaimers; being upfront with your clients; knowing who your clients are; and ultimately being really familiar with our ethical code.

Dr. Amanda Kelly: And I will tell people that I don’t have it memorized. The more you are encountering a situation or being asked a question or engaged in discussion, the more familiar you will become. But I recommend that people take a situation or a scenario and walk with that scenario in mind through the ethical code and say, what could apply? What could be something that maybe I need to look more into? And it always starts with just that gut feeling. Like, is this right or should I look into it? And we tried to make that more tangible in our paper. So it is available and you can get access to it through research gate, which is a nice way to access publications that might not otherwise be available for free. So we have that accessible for people there.

Mary Barbera: Great. I know in our first ethical interview with Dr. Eileen Schwartz, from the university of Washington. She is really under the opinion that ethics is by its very nature, very gray, very blurry. And that, you know, I was in a workshop with her, a three hour workshop, and that’s when I first really liked her approach to ethics. And as we went through the code to grapple with a particular case, what we found was you could make arguments that by violating this code or by adhering to this code, you were actually kind of slipping and violating this code. That it was kind of like a whack-a-mole and kind of, you know, it is very gray and some of it is judgment and just your clinical practice and kind of the overall first do no harm kind of thing. Do you agree? Disagree?

Dr. Amanda Kelly: It’s been my experience as well. And I think I go back to the three guiding questions are in our Cooper Heron and Heward book, which say, you know, what is the potential harm to the client? What is the right thing to do and what does it mean to be an upstanding BA? And if I go back to those three basic questions, you know… Let me give you an example. The example of accepting foods as gifts. That is a hot topic. I know that’s been discussed by many people in your groups and as well as other online platforms.

Dr. Amanda Kelly: In Hawaii, there’s food plentiful; there are bananas and avocados and mangoes and papayas, and it’s magical. It’s one of the magical parts of living here. We’re struggling in some other ways, but… if there’s an overabundance of food, it is an atrocity to see that go to waste, to see that you’re not respecting the land and what it produces for you and being grateful and sharing your bountiful. If I were to walk into a home and there were 100 bananas on the counter or out on the Lanai, and as I’m walking out, someone handed me a bunch of bananas and I didn’t accept them, it would be disrespectful, potentially from a cultural aspect. It could be very isolating, stigmatizing. It could put barriers between me and the client, which could impact my effectiveness.

Dr. Amanda Kelly: So on one hand I can’t accept gifts. And how do we define a gift, and is food a gift? I think that’s an interesting question and you could probably make a case in both directions. On the other hand, you know, let’s say that it is a gift and we identify that it is something I should reject. We also have an ethical obligation to be culturally sensitive and to not discriminate and to make conditions that would hamper our effectiveness.

Dr. Amanda Kelly: So I could go on both sides and I could debate myself and be right on both ends, or wrong on both ends. But go back to the question: what is the potential harm to the client? Right? What does it mean to be a good behavior analyst, what is the right thing to do? And then we get a better understanding of what level we’re at here. Are we looking at something at the 10,000 foot level and over analyzing every little amp below us? Or are we really looking and saying, you know what? Even though from a cultural aspect that could be a barrier, if I appropriate explain it, put in antecedent manipulations maybe accept the first time and then sit down with the family, then I can maintain that appropriate objectivity without creating an unnecessary barrier.

Dr. Amanda Kelly: The obligation as a behavior analyst is to have that conversation with yourself, with your mentors, with your experts, with each other, and to not just say, you know, it’s all or nothing. Ethics is hardly ever all or nothing unless it comes down to legitimate physical or emotional harm.

Mary Barbera: Well, which is more illegal than unethical. And that’s the other thing is like it’s either… If it’s illegal, you know, obviously we’re not even getting into the ethics part. And I think it’s also, for those of us that have been certified, I’ve been certified since 2003, is the rules changed; it didn’t use to be a code not to accept gifts. So it was kind of an abrupt shift. And so some of the newer behavior analysts might be more black and white because they never lived under the old code or you know, anything like that. But yeah, I agree. I think food and a glass of water and a cup of coffee, you know, it could be just the culturally sensitive reasonable thing to accept, and then you know, kind of work on dealing with that later.

Mary Barbera: But, okay, so let’s get back to Behavior Babe as a persona or… I don’t even know what you call it. Is that what you call it? An online personality? A public figure. So when did you create that? I remember standing at an ABAI conference at a poster session on dissemination, and there was Behavior Babe, you know, the character. And I’m standing with Megan Miller and you, I just met and I said to Megan Miller, who is this Behavior Babe chick? And you’re like, I don’t know if you remember that, but I do. Cause it was like the first time that I put two and two together. But how long ago did you create it and have you received any backlash about just that?

Dr. Amanda Kelly: Yes, I will tell you all of the answers to those questions. I vividly remember that moment and I think that was our first photo together, the dissemination poster. And it was when I started being like, wow, I mean it’s on the poster, but also you kind of had heard of Behavior Babe and people were saying like, who is she? And I’m like… it’s just me. It’s just this thing I created.

Dr. Amanda Kelly: And initially I was kind of embarrassed by it too, because I was getting my doctorate and I would get introduced by like Jack Michael or Mark Sundberg is there and they’re going, oh hey, this is Behavior Babe. And I’m like, actually, my name is Amanda Kelly and I’m working on my doctorate and it’s an honor to meet you. Now I very proudly wear that title and the way that it started was, it was in 2008 I was consulting for a public school district. I was an inhouse behavior analyst. I had eight of 13 schools, so it was a large case load. It was an impossible task, but it was one large shaping procedure, I will say. And we did see positive changes. Two years into that position, I was injured on the job and I had to stay home after a surgery, and they didn’t replace me regardless of the fact that I was written as a service into many IEP at the time in Massachusetts. They made whatever agreements or what have you with the families or didn’t make them. All I know is that I was told I wasn’t able to work because of workman’s comp. It was a work related injury.

Dr. Amanda Kelly: But what got me the most was these teachers who wanted nothing to do with a difficult student in their classroom two years ago, we’re now in a place where they’re like, Amanda, okay, I have this new student. I see this pattern. It reminds me of this kid. I created this data sheet. Can you take a look at it? And I was like, oh my gosh, of course I will take a look at that. And I was like, slapped on the hand by administration because you cannot work while you’re on a workman’s comp claim or you’re going to negate your benefits. And so that was unfair and unfortunate and I’m kind of a moralistic person and a lot of what drives me.

Dr. Amanda Kelly: And so I created a website that had a password and I gave the password to the teachers. And the teachers could go there and download data sheets and sample reports and get what they needed to get without it being publicly accessible to everybody. So I was able to do what I thought I could do to help them while still trying to maintain some of the semblance the separation that I was asked to have. And that website was called, it’s real catchy: ABAMA.dot.webs.com. Very memorable, but it stood for Applied Behavior Analysis in Massachusetts and dot. webs was because it was the free hosting site and I didn’t pay for the site initially.

Dr. Amanda Kelly: But it was interesting because that was also the year that we had Barack Obama going for presidency, and ABAAMA is very close to Obama. So I started getting a lot of traffic on my website and I could see why people were coming. So I was… And I had opened up some of the resources a little bit once I was no longer working for that district. And I then opened up the resources, started filling it in. I asked former paraprofessionals and classroom teachers and parents if they thought the site would be useful. The website, you know, would you find it valuable to see a sample report to see a data sheet and I got a lot of feedback, and it took a while for it to really materialize into what it is now. But it wasn’t until 2009 when we were going to… ABAI and Twitter was kind of coming about and everybody got a screening. Like you need an online moniker, a recognition.

Dr. Amanda Kelly: And so there was misbehavior and I thought, gosh that’s the best one. There’s behavior guy. And I was like, behavior lady, behavior woman, behavior, child behavior babe, and alliteration and me are friends. So I put it down as a Twitter handle and then I thought, you know, it’s kind of funny when people introduce me that way, but it’s also really memorable. And so I went ahead and purchased that domain name and switched the website over and really started getting more concentrated traffic and interaction with people.

Dr. Amanda Kelly: And then the following year I had the idea where I think Facebook was really doing these pages and I thought, you know, I’m no lady Gaga or what have you, but like let me see if this is something that will garner a following. And now it’s been eight years on Facebook and we’re nearing the 30,000 mark, which I think is really phenomenal because I never put autism in titles. I never put other buzzwords or keywords and titles. I didn’t even use ABA or behavior analysis, it’s just Behavior Babe. And so the traffic is very unique in that way. And I think we were able to create a network which has afforded me a lot of benefits, like publishing papers, being interviewed, dialoguing with experts, meeting people who I admire, and also just in increasing the conversations about behavior analysis and about behavior change.

Dr. Amanda Kelly: And I think Mary, that’s where you and I probably connect the most is in I think information should be freely accessible to people or should be easily accessible to people in a way that they can digest and receive so that we can get change to occur for these children, for adults, for whoever needs this change in their life. And of course there comes a point where you’re going to need a consultant or there comes a point where you might need more involvement of a program. But even if you know that, even if that’s the track that you’re on there is, there are too many people waiting for services. And when I think about the ethics of an effective scientific technology, nothing feels more wrong and harmful to clients than withholding this information from them or not doing my best and your best to get the information out to them.

Mary Barbera: Right. And you know, that’s been my mission over the years is to, everything I publish is for both parents and professionals. Everything is can be easily understood by a novice, but it certainly could also be digested from a seasoned professional. And yeah, I produce weekly video blogs. I have a large Facebook page, you know, we’ve connected on many occasions; spoken at conferences, and I think we really have the same passion to really help families, you know, struggling with waiting lists. I mean there are very long waiting lists for an autism evaluation. I’ve heard, you know, nine months around here, I’ve heard two years from five different people. I just did a webinar last weekend and I said like, can you imagine if you thought your child had cancer? And you were told that you would wait nine months for an evaluation and then once you got a diagnosis of cancer, they were told that you had to like sit on the phone and try to figure it all out and wait another nine months for chemotherapy?

Mary Barbera: I mean, that’s what we’re doing to families. And then, you know, behavior analysis is saying you can’t help people if they’re not your client and all this stuff. And it’s like, well, I can at least send them to resources, I at least send them to my book, to my weekly video blogs. You know, I just created a three step guide that is going to be for parents and professionals. Like no matter where your child falls on this spectrum, no matter what age… Because everybody’s going to be starting at a different point, but the same principles of ABA could be so helpful. And instead we have parents, you know, posting on other non-ABA groups, getting very bad advice about lots of different things and really struggling. So…

Mary Barbera: So, switching gears a little bit, but what do you see as a very common ethical issue or a very disturbing ethical issue that you know, you see all the time that you really think is a problem.

Dr. Amanda Kelly: One of the things that we talked about in our paper was even when people are going online and they’re saying can you help me find literature on X, Y and Z? Now that is a much better question than what do I do for a client who is-? and they’re asking for specific kind advice. I think what we wanted is we want to show people where to access information and provide formulas and strategies for them because we need problem solving skills for our behavior analyst, for our parents, for our physicians; versus saying this is the intervention and this is the way to do it. Because I’ve been certified since 2005 myself and there aren’t so many changes in regards to supervision and supports on the provider end. But there’s also a lot of changes when we look at like the VB-MAPP was something that was post my Masters.

Dr. Amanda Kelly: So our field is continuing to grow and change and we are developing technology and information. So I like that people are asking for help. What I don’t really… what I’m not too sympathetic for is if you ask a question of me that you could ask Google. Start by going to Google scholars, start by going to research gate, start by digesting what you can and then ask a question that engages somebody on that. Like hey, I’m reading about this self-stimulatory behavior and I’ve noticed you know, something like this. Ask a question that delves you into like more research that you couldn’t find on your own or information that you weren’t able to detect. I think that there are people like ourselves and others who are there guiding a lot of these discussions and our time is limited and a lot of time it’s volunteer and we want to be able to continue to provide those kinds of guidance and support.

Dr. Amanda Kelly: But one of the things that I see a lot online that frustrates me, I think is the willingness for people to give advice without thinking of the fact that there’s not a client relationship or that they don’t have context. And if you feel that you’re appropriate to do that, then there’s mechanisms for that. There’s private groups, there’s offline discussions, there is additional follow-up. And we don’t always know what’s going on behind the scenes for some people online. And if I said to a parent for example, or I said to another professional, yeah, what we did was a blocking procedure and we put gloves on their hands. Now that’s perhaps nothing wrong with what I said, but it didn’t take into account a medical history that I knew nothing about. It didn’t give context that I didn’t know that they needed from my situation. And they could potentially very, very well-intended do something that ends up being really harmful.

Dr. Amanda Kelly: And then there’s the flip side of that where I see people who won’t give any information, won’t give guidance, won’t give support. And so I guess if I were to really boil it down on it, especially in an online world, it’s the black and the whites and the hemming and the hauling and a lot of finger pointing that can happen within a profession in which people are striving to be the next somebody who has the greatest information, or how we’re trying to maintain an integrity of our field and tell somebody else not to do what they’re doing. It’s not really about policing, it’s about partnering. It’s about partnerships, it’s about working together. It’s about assuming that we are all coming from a place where we want to help people and whether that is the teacher asking the question, the behavior analyst providing the advice, or the parent just trying to help their child.

Dr. Amanda Kelly: You asked me earlier, and I didn’t intentionally circumvent the question, but about any backlash and when you put yourself out there, you absolutely will need to expect that you’re going to receive some negativity. I think that’s just an odds game. And what I try to do is I try to own anything that I may have done to contribute to a misperception, or if I have represented myself in a way that is no longer how I view myself or information. So, you know, certainly when you put things online 10 years ago, they’re here 10 years later and you’re held to them. They’re, you know, they’re tangible living products of your verbal behavior. And that can be really positive when I, you know, we’re working with legislation here in Hawaii always it seems trying to get access to these services. You know, we’re able to use social media to our advantage and we’re able to show that we’ve been advocating for, you know, the five years since I’ve been here and longer than that, prior to me coming, and then what we were doing in other places as well.

Dr. Amanda Kelly: I found that the… I had a recent, actually a situation in the last year where a lot of the community who believes that behavior analysis is abuse, kind of targeted on my online persona and said, you know, everything you’re doing is harmful. You’re taking away their voice. And that was hard to hear because that’s not at all my mission. And even if it was coming from people or from a place that they would say those things almost no matter who they were directed at, I still took the moment to reflect on my own behavior, because that ultimately is what we can control is our behavior and our environment. And I believe that the value that I can contribute, even if there’s, you know, some things that aren’t perfect about my advocacy efforts, the value I contribute in the goals that I aim for and the place at which I’m coming from, I do feel are very valid and supportive. And that gets balanced, too. I said there’s negativity but it’s probably 80/20. 80% positive, maybe 20% of that negative. And when you look at that from a behavior analytic standpoint of like the matching law, I’m going to allocate my behavior where I get the most reward and feedback and gratitude. And that really has been much more on the positive side of things and being online. But negative happens. It’s a part of it. And I think again, avoiding conversations is not the way in which we are going to navigate these situations.

Mary Barbera: Yeah, that’s definitely true. And I’ve also, because I have a large social media presence, I run Facebook ads… I use testimonials and some behavior analysts are posting on my, you know, Facebook ads that they either won’t… Behavior analysts are just saying, you know, how dare you mention this or you know. One time I posted a study that was posted by Autism Speaks on, it was a small study but it was placebo, you know, a double blind placebo effect study on use of, I think it was like folinic acid or something. And it showed major gains in the kids that got it. And I thought, wow, you know, and I shared it and some behavior analyst, how dare you as a behavior analyst share this study, we all know that all biomedical treatments are, you know, pseudoscience.

Mary Barbera: Like, excuse me, I’m also a registered nurse and a parent and I have a PhD. So I would think I could look at, I mean, of course I didn’t read the whole study, but like, I don’t have time… You know, I’ll do a video blog on how I wouldn’t start with more in please and thank you as the first words, you know? And then I get emails from speech pathologists saying, where is your research to prove that? It’s like, it’s common sense. I’ve worked in the field for how many years? Like it just makes sense in terms of motivation, in terms of shaping and all kinds of ABA principles that you should start with a single word manned sign, picture exchange, you know, something to get the child requesting.

Mary Barbera: And I kind of get a little, I mean, when you’re saying 80/20, I mean I don’t get 20% backlash or I really feel like beaten up constantly. But you know, in a lot of ways you and I are both now in more of the online marketing world. And I have a mission to turn things around for 2 million kids by 2020. Like I don’t have time for negative nitpicking. Like, let’s go, you know, these people that purchase my online course are not my clients. I don’t see them. I don’t give them specific advice about their specific child. What I do is I make step-by-step processes that work for many people. They view the videos, they ask questions to clarify if the procedure is not working, and they make gains on their own. Like that is not me being their behavior analyst and them being the client. But it is really tricky to navigate and not sure if you have any additional comments…

Dr. Amanda Kelly: Well I think you make a really good point and it’s something that is worth emphasizing for people listening: you have a nurse by background and you are also a doctor. I think you have your doctorate; you have personal experience from your role as a parent of a child on the spectrum as well as a child not on the spectrum. And all of that lends itself to expertise. And I think people would define that as saying, that’s expertise in something. For myself, I’m not a parent. I have a background in elementary education. I think that’s important when I’m talking about advocacy in schools, when people say you don’t know what it’s like in a school, and I said, I do. I was a student teacher, I was a paraprofessional, I was a classroom teacher, I was a special educator, I was a school-wide consultant. And I know how impossible change can be when a system isn’t working, regardless of people’s intentions.

Dr. Amanda Kelly: So on BehaviorBabe.com the first page is a welcome to, and here’s who I am. So you know, don’t take my word for it or if you’re going to take my word for it, here’s why my word should matter. When I’m seeing so much of the online promotion and when I’m seeing snake oil salesman and how do people differentiate an online marketer and us from something like that? And it’s, to me, it’s really looking at how transparent are people? Where do they pull you to that research? No, Mary, you don’t have to have a study saying you know it’s 200 mans before you can introduce one tac because you know what, we need to teach them the name of an item before they can man for it. So hey, come on everybody.

Dr. Amanda Kelly: But the research does exist from Skinner from, you know, Mark Sundberg. Like we don’t need a study that says on Tuesday while wearing a blue sweater and interviewing Amanda Kelly, Dr. Barbera is going to be the most ethical she’s ever been. I mean there’s no study on that. What we have is we have information about behavior analysis, behavior analyst, online experience, our history and our expert context. And ultimately, I don’t want to dismiss people and say, again, just take my word for it. But if you’re going to, here’s why I think my word matters.

Dr. Amanda Kelly: And if you’re going to go somewhere else, I want you to ask them what studies, not studies have they read, but what have they studied in their lifetime? Who has been their guidance? What is their lineage in that respect? Right. You know, to be able to pull and not as a name dropping situation, but to say like I, I got this information firsthand. You know, I studied under Vince Carbone, I go to Dr. Sundberg’s workshops, I go to your workshops, Mary, over the last few years at ABA and feel like… No offense to Dr. Carbone. It was more, you know, philosophic. But like rubber meets the road and at the end of the day asking ourselves these questions, having these conversations with each other, inviting other people that have these conversations with us, assure me that we are doing the ethical thing, that we are being ethical and if we’re not, we’re going to catch ourselves. We’re going to put ourselves in check, we’re going to put each other in check and we’re going to reflect and revise, and then we’re going to continue to access and give people access to effective technology that’s going to impact change. And our ethical code says it’s our ethical obligation to disseminate information. So there’s an opportunity where we could say, oh no, don’t, don’t let people tell you how effective and helpful you’ve been, but it’s your job to tell the world that.

Dr. Amanda Kelly: And so again, it’s that what is the harm to clients with some benefits of clients, what is the right thing to do and what does it mean to be a good behavior analyst? And I think that that really can answer almost all of the ethical questions or scenarios that we’re going to encounter.

Mary Barbera: Yeah, that’s great. So if you had to summarize what top three or four or five things that all behavior analysts and professionals should know about ethics, what would be your top three or five?

Dr. Amanda Kelly: I think it’s really important for people to know the code; to know where to go to the code and to not disregard or disrespect the code. The fact that it’s been written and rewritten tells me that it’s being revised based off experiences. And I have a lot of faith and belief in the people who are working on that. And a lot of people who I know who’ve been involved in that I have respect for. Know the code. But what I mean by that is I don’t care if you know that 1.04 for his integrity. The reason why I know that 1.04 integrity is because when people have violated the code, they’re almost always violating that one, which says that we are upstanding individuals and we have the right to give our clients access to treatment, and that we’re ethically advocate for effective services, right? And so there’s not a need to memorize, but there is the need to do that journey to walk through it. Okay. The parents gave me a bunch of bananas today. I’m going to walk through this. That sounds like a simple one. It sounds a little silly when I go through it and then think about another one.

Dr. Amanda Kelly: Okay. I’m no longer working with the client. They invited me to a birthday party, can I go to that one? Well you feel like, yeah, of course I can. I’m no longer with the client. But go ahead and validate that by walking through the code that does say you no longer have this relationship. There’s no longer the harm of a conflict. And so there’s not a dual relationship because you’ve terminated the other relationship. So it’s not like go there and find a way to weasel out of the code or to go there and find a way to smudge yourself into feeling better about something. But really walk through it. And what I find is you’re gonna, you’re gonna boil it down to one or two, if it’s something that’s really not feeling right, you’re going to find 15 or 20 places where it kind of technically could come in. So no need to memorize, but do that walk through.

Dr. Amanda Kelly: The second thing I would say is maintain your relationships with your mentors. And as your mentors age or move away or you find other people that you connect with, make sure you just identify and develop people you can trust and reach out to. Mary, you and I have done that many times. Dr. Megan Miller as well. Many times there have been situations where I’ve taken feedback and made changes and it’s by people who I trust to tell me when I’m wrong, like family, right? But I know will still love me and support me and help me and those are going to be people that we’re going to be the most receptive to hearing critical feedback from. And we need to put ourselves in a position to be able to do that. And that’s just for making even behaviors standpoint really hard to do.

Dr. Amanda Kelly: And then my newest sort of soapbox regarding the ethical code is, okay, don’t go around nitpicking each other. Really start looking in first because there’s so much that can be reflected and refined individually, internally, or strengthened about our own practices. And we’re going to do a lot of good to our field by spending energy modeling what needs to be replicated and emulated. So I think that’s important. I also think though that if we truly do feel there’s a violation, it is not within our code to go on Facebook and to post it on somebody’s ad or to publicly shame them or to say like, stop what you’re doing. It is within our code and our obligation to reach out to that person in a private format and to say, hey, I see this thing online and I have this question, and it makes me feel uncomfortable for this reason. And I think it’s connected to this part of our code. Can we dialogue?

Dr. Amanda Kelly: And I have met with, especially since living in Hawaii and our services are new, we’re about two years into having access to services. Anybody really outside of the military. So we’re very, very new here. But I’m finding there’s a lot of reasons to have conversations with people about their ethics. And a lot of that is the novelty and the newness and working within our existing systems that haven’t had these supports. But I will say trust in the complaint and the review process. I haven’t always been a believer of it. And I’ve wondered, you know, is anybody listening on the other side of the what feels like a disconnect when you’re reaching out to an entity or a board or an organization. But in the about 20 times I’ve met with people over the ethical concerns and that’s a high number, again, I think because of our situation, 18 out of the 20 were easily resolved. It was a matter of a conversation and misunderstanding, a perspective shift, or even just more information that was needed for me with my concerns. And I’ve had those conversations where people have brought things to my attention about my behavior.

Dr. Amanda Kelly: So 18 out of 20 excellent, excellent outcomes there. One is under investigation now. Another one was issued a formal warning. And I felt like that learning was appropriate. It let them know that there is a mechanism that there is a board, but you messed up and the client’s not being harmed. But here’s how we’re going to ensure they’re not harmed in the future or that they’re not likely to be.

Dr. Amanda Kelly: And one book that I’ll recommend to people, and I have no stake in this in their sales, but I found it to be really helpful, is called Difficult Conversations: How to Discuss What Matters Most. And it’s written by some folks at Harvard school. It’s about $10 to $15, very quick short read, and it talks about how to tell somebody they’re dying and they have terminal illness; how to tell somebody you’re moving and you’re not going to be in their life anymore. How to break up from a relationship, or how to confront somebody that you feel has done harm to clients that you guys are supposed to be working together for. And again, we’re not going to solve things by avoiding the conversation.

Mary Barbera: Excellent advice. And I will look into that book. That’s great. So ABA has come a long way and I’m just wondering what your hopes are for the future of the field.

Dr. Amanda Kelly: Well, we recently, Megan and I and some other authors, worked on publishing a paper that’s now in press, in behavior analysis and practice. And it’s called Start Spreading The News. Of course we like music and I can sing that now, but we were looking at dissemination of behavior analysis. We were looking for it outside of the United States and we were looking for it outside of just autism or early intervention. Although I am not the kind of person to say we have enough focus on that because I don’t think until we have children accessing services at the time and at the intensity that they should, I’m not getting off of the autism soapbox. But I am definitely very mindful and in support of us also helping other populations in areas in need. So I want to see insurance coverage or funding outside of the United States and I want to see it global. I don’t want to see these bits and pieces of fights.

Dr. Amanda Kelly: Now I recognize insurance has added a layer of difficulty. For providers, I would just say get involved, stay involved with our professional associations because there are people doing a lot of work helping us out there. I want to see no age and dollar caps. I don’t want to see made up barriers to service because you know your name starts with an R and you were born in this part of the country and you’re a girl so you don’t get this. Like I don’t think so. So we’re going to continue to work on that. Services should be early and intensive. Okay. You get a diagnosis, you get prescription, you get access to these services, you get, you know what, we’re going to give you six hours a week for the next year and then on your birthday when you turn eight we’re going to just stop. None of that makes sense to me. I want to see access to these technologies integrated appropriately into our education system.

Dr. Amanda Kelly: I do not feel the responsibility, although I respect the families and a lot of the early intervention providers for taking a lot of their responsibility on themselves. We need systems that work together and I also, on the flip side, then need to see and want to see… We’re working towards a lot and seeing progress for adult services in Hawaii especially. We have age and dollar caps that were voluntarily removed two years into getting service. That’s a benefit to being the 42nd state is that when you have, you know, more than 75% of the nation then it’s easier to compel them this is the right way to go.

Dr. Amanda Kelly: And then I guess these are all inner-connected, but I want to see ABA behavior analysis recognized as the standalone profession; that is already the case in many situations. But you know, you talk to me Mary about the family who, whose child might be diagnosed with cancer waiting 10 months to get, you know, even a prescription and then waiting longer and then they have to sit on the phone. I use also a medical analogy to describe how I feel as a provider. And I say to people, I say to our legislators, you know, imagine being an ER surgeon and you’re working a 16 hour shift and then you have to come home and spend 10 hours defending your right to do that again tomorrow. If you want us to be at the best place for these families, for our teachers, for our community, for these children, for these adults, then I need to get at least two hours of sleep a night, hopefully more. So I would like to see our energies focused on improving the technologies and having to work less for advocacy on access.

Mary Barbera: And for even payment. You know, I don’t work with clients anymore. I don’t accept insurance. I’ve never have. But I know providers that have worked with my son; who work with other families; with school district, well not really with school districts, but with insurance companies and they string you along and you got to jump through these hoops, and they make it very difficult to kind of stay in business to provide the service that these kids really need. Do you face that in Hawaii?

Dr. Amanda Kelly: Yeah. We do have a lot of barriers in Hawaii. We’re an Island chain and they will not fly providers to other parts of the state. And so through like Medicaid and things like that, you have to, so we’re finding even when there’s half to’s, you still have to essentially lay that pathway for people. Again, a lot of this stuff here, I always start with, if people knew better, they would do better. And so start with an educational aspect and providing information and that context. And then if that’s not the case, then I guess we’ll just publicly acknowledge the people who are standing in the way from children achieving and accessing. Of course as behavior analysts, we want to be positive. We have made a lot of allies in a network that we’ve created here and that’s happening across the world. And what we’re finding, what I’m seeing is, you know, 20 years into this field, yes, there’s a lot of debate. Yes, there’s a lot of discussion, but it’s advanced in the numbers of our field are rapidly increasing, which present their own, you know, barriers and challenges at times, too. But let’s find the positive and the growth. Financially I think it’s really important that a provider not seek one funding source. So whether you have private pay, you’re able to work with some Medicaid clients. Medicaid is a federal protection that we had a lawsuit here for to see it rolled out. But we are seeing, I think we’re listed as one of the States with the best Medicaid implementation. So that’s incredible to think when you’re an Island state that you could be the best at something when you are so late to the game.

Dr. Amanda Kelly: And I think that’s because you forge these relationships, you maintain positivity and then you just drown them in facts. And ineffective change. And Mary, that gets us back to a testimonial or a video and you know, I’ve had clients record sessions that I do, and the family shares it. And they’ve asked me, you know, Hey, do you care? And I’m like, this is your priority. This is your home. I’m not sharing that video because you’re a current client of mine; when you’re no longer a client of mine I have every right to ethically do that. Now of course, consent. We want to make sure that I’m not doing this to show how amazing I am. I think that’s the other thing here. Of course we get our, you know, rent paid or our mortgage paid by providing services that we provide. But ultimately I don’t want people to remember or to think Amanda was awesome. I want them to think behavior analysis is an amazing technology that saved my life

Mary Barbera: And to be able to learn the techniques to put them in and to see real transformation with their child or clients. And that’s what we’re seeing and it’s so, you know, incredible when we can put in the right services and we can give the right information to truly make a difference. So I think we definitely are both on the same bus, going towards the same mission, and hopefully in the future we can just continue to collaborate and spread the word. So how do people stay in touch with you? Where can they join your Facebook page? Or how best to keep up with your amazing work.

Dr. Amanda Kelly: Facebook is definitely where I’m going to be the most attentive. Facebook has this punishing or reinforcing aspect where if you get back to people quickly, they say like, you’re doing so great at getting back to people! Or Oh, you didn’t get back to that woman and if you don’t… And I try to rise above it and tell Facebook like, I know what you’re doing to me. But alas, I’m a human and I’m behaving and my behaviors are controlled by that. So Facebook Behavior Babe is the way to find me.

Dr. Amanda Kelly: The website, www.behaviorbabe.com is a place where those resources are stagnant and they’re, well, they’re revised, they’re updated, but they’re tangible, so you don’t have to scroll through and try to search. Like where is that one thing she said. And I don’t have a search function built in, but a wonderful and annoying thing is if you go to Google and you type in any keyword and the word Behavior Babe, it’ll take you to where I have that resource. And so until I find a better way, there is that option.

Dr. Amanda Kelly: I’m on Twitter. I’m at, you know, probably 50 conferences it feels like a year. I prefer to meet people in person or to see their faces like we’re doing today. Just wanted to make sure my hair was up and done for you. To me, I want people to know that there are many experts and advocates and allies in our field who are people, and we are interested in talking and learning from others, and that has been the biggest advantage for me having Behavior Babe. I know I mentioned publications and network and access, but when somebody tells me something you did helped us, or something you did saved us, or something you did let us to getting ABA in the Czech Republic… I’m just like… From my couch? That’s incredible. So yeah, find me there, find me that way.

Mary Barbera: I hope you enjoyed that interview with Dr. Amanda Kelly, and if you would like to learn more about my approach, my online courses, and community, I would love it if you would attend a free workshop at marybarbera.com/workshop and I hope to see you right here next week.

Thanks for listening to the Turn Autism Around podcast with Dr. Mary Barbera. For more information, visit Marybarbera.com.

 

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