Applied Behavioral Analysis
Show Notes for Embracing Autism Podcast — Ep. 110
Introduction
Lia: This episode we review what’s considered the golden standard therapy for autism — Applied Behavior Analysis, also known as ABA, and discuss common goals for this form of therapy, how it is used to improve a child’s quality of life and what makes it so controversial.
Lia: Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support while spreading awareness and acceptance of Autism Spectrum Disorder.
Lia: I’m Lia!
Matt: And I’m Matt!
Lia: And each week we will discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources and sharing our personal stories. This is —
Lia & Matt: Embracing Autism!
Discussion
Matt: If your child received an autism diagnosis, chances are your doctor more than likely referred you to ABA therapy because it is considered the gold standard for therapy. Now because ABA is kind of the go-to therapy when it comes to autism, it is typically covered by most insurance companies. However, I would highly recommend that you check with your insurance company if you are considering ABA just to ensure that it is in fact covered. Now, I also want to make you aware that ABA is a little different than some of the other therapies that we’ve talked about and this is most likely because there is such a significant time commitment for the therapy. Most other therapies such as OT and PT, you’re looking at a therapy lasting 45 minutes to an hour, likely once a week. But with ABA, you’re looking at something between 10 to 40 hours a week depending on the needs of your child. So this is a much more rigorous therapy in comparison. The other thing to consider is not all the 10 to 40-hour duration will take place in a facility. This might also take place in your home or at the child’s school if they are of school age. This is important to remember because you need to make sure if you are considering ABA that you have the time commitment, and you’re okay with any type of lack of privacy because you will have a therapist in your house performing the therapy. The main thing to keep in mind is ABA therapy does require much more dedication in the hours that are spent with the therapy, as well as the therapy being much more invasive and coming into your own personal space at your home. So just take that into consideration.
Lia: So this episode is going to be a little heavier in terms of the information that we’re providing because ABA therapy is a pretty dense topic. There’s a lot to go over and there’s really a lot of information to unpack here so I’m going to try to go through the key components, but I would really encourage you to continue to research it after this podcast episode because there’s just not enough time to go over everything. But I’m going to try to go through the things that I find personally most important, and the reasons why we decided to consider alternate therapies. First thing I’m going to do is go through the background of ABA therapy a little bit the origins of ABA therapy and what exactly it is. As Matt mentioned earlier, it is considered the golden standard of therapies for autistic children. That just means it’s typically the go-to therapy and this is because it has been around for quite a while now. It was actually created by Dr. Lovaas in the 1960s and this is where a lot of that controversy comes from. The origins of ABA therapy are pretty sketchy, to say the least, there’s plenty of YouTube videos that go into this if you guys are interested. But in layman’s terms, the origins of ABA therapy were pretty abusive to children. They essentially were using a reward and punishment system back in the day. And so the punishment system was the thing that really drew a lot of attention to the negative side of ABA therapy because children were actually suffering consequences for not performing the desired behavior. This is something that has changed for the most part in today’s ABA therapies, unless there is a particularly bad ABA therapist who’s not doing proper ABA. According to today’s standards, there should not be anybody punishing children nowadays, that would be considered unethical and against ABA current standards. But it is important to know why this is considered a controversial topic because of those origins. The other thing to know is that the earliest form of ABA was considered something called Discrete Trial Training or DTT. This is something that is actually still used in today’s ABA therapy. Our child actually has a little bit of this in her speech therapy classes that she goes to, but it is something that is pretty specific to ABA both early on and today. Now, what Discrete Trial Training is, is essentially a very structured format to allow the doctor who’s working with the patient at that time to break down specific skills or behaviors that are considered desirable for the child to learn at the time. And they break it down into what’s called discrete components — so that’s why it’s called that — and so the child is going to be led through an activity that’s designed to teach this specific component to them and then they’re told to repeat that activity. Exactly the same way, many, many times over and over and over. And if they complete that task correctly, then they will get a reward for that successful completion. And at the time, if they did not complete that test successfully, they would end up getting punishment for unwanted behavior. And this training was done as many as 40 hours a week back then. Today in the altered version, as I mentioned before, there’s no longer that punishment component, but there is still that Discrete Trial Training with the positive reinforcement component. And in today’s ABA, it does still typically go anywhere between 10 to 40 hours depending on your state
Lia: The newer approaches of ABA have tried to tackle this issue because as you can imagine, there’s a lot of unethical concerns there with the punishment aspects. So most of that has been eradicated. Like I mentioned before, if you see your ABA therapists doing anything that remotely looks like punishment, that goes against the guidelines, they need to be reported, because that’s not allowed anymore. What they try to do now is something that’s called incidental teaching. And incidental teaching is a way to be able to have your child still learn these skills, but now it’s going to be in the context of play, or other activities that would be a typical part of their day. So instead of having them sitting in this room, where they’re just doing trial after trial after trial after trial of the same task over and over, like ABA used to be, it is now that the ABA therapist might come into your child’s environment, whether that’s school if they’re in the public school system, or if it’s at home, or some ABA locations do actually offer a clinic. So the therapist will come to these locations, but it’s most ideal for that clinician to be in an area that your child goes to day to day rather than in the clinic. So they might even come with your child to like the playground. If they’re used to going to their aunt’s house, they might go over to the aunt’s house with them, they will just follow your child around their normal day, and try to incorporate opportunities for therapy throughout that day. The other thing that they do is try to take advantage of what your child is already typically doing or wanting to do. So if the ABA therapist comes to your house, for example, and your child’s really fascinated by their toy cars, your therapist comes in, they see that your child’s playing with toy cars. And they will see that as an opportunity for therapy, they will, they’ll see the toy cars as something that they can use to have your child engage in this Discrete Trial Training with them. So they will try to incorporate that into their therapy sessions for that day. And if your child switches what they want to play with, they’ll switch that as well. So they won’t keep your child stuck on that same task. If your child is leading them towards something else, whether it’s puzzles or anything like that they might have your child take the lead and follow.
Lia: Another thing that they will help with is these are things that you can get in other therapies as well. So things like how to dress yourself, or how to brush your teeth properly — life skills like that, you can learn these in OT as well. The difference here though is that the ABA therapists will follow you around in your own environment and also give you that consistent reinforcement so that your child is essentially exposed to do this repeatedly and will kind of learn it through osmosis by that repetition, as opposed to going into a clinic for one 45 minute session a week. Another form of the discrete trial training that they might do is for example, if your child is sitting at the dinner table, and you’re trying to teach your child how to properly pick out the fork or spoon that they’re supposed to use to eat with their meal, if they don’t typically use tools and they’re eating with their hands, they might then say, okay, which one’s the fork? Or they might hold it up and be like, Can you pick the fork and they might hold up a fork and a spoon and see if your child can pick out the correct utensil and then reward them that they do. Sometimes they might use like a treat like an M&M, or they might use things that your child likes like a tickle, or a sticker or something like that. Whatever really motivates your child to complete that task that’s very child-specific. So that is ABA in a nutshell. Now there’s a lot of reasons why people may want their kids to go into ABA. Like I said, there’s a bunch of other alternative therapies but ABA specifically tends to be chosen when there are specific behaviors that your child is performing that you would like for them to stop performing. It went from something that is from a reward and punishment system to a system that is attempting to diminish behaviors that are considered harmful to your child. This might be something like self-injurious behavior, and that can be something like the headbanging, or there are some older kids that have more severe self-injurious behavior. There are people who actually might pull their hair out or they might actually injure themselves more severely, to the point where it’s really really a potential danger, and sometimes it may seem that standard therapies don’t work for that. So a parent will go to ABA therapy as a way to resolve that issue. With all that said, there are a lot of potential benefits to ABA and there’s a lot of potential pitfalls to ABA, it is really specific to who the ABA therapist is whether or not they’re following the current guidelines, and even despite all that, I really encourage if you are considering ABA to make sure you observe every single session because you really need to get a feel for how your child is feeling in that session, and see if they’re getting overly stressed or not. There are a lot of ways you can see whether or not that program has any major red flags. Some of the things to consider are whether or not the program that you’re looking at has been using proven studies that are effective to base their strategies off of. So make sure that the strategies that they’re using are not something that’s off the cuff, that they’re just kind of making up and thinking that that’s what’s going to work, you want to make sure that they’re using evidence-based therapy. It’s also considered pretty sketchy if they’re not collecting any sort of data throughout the sessions. So I know for our child follow, she is not in ABA therapy, she does use the discrete trial method in some of her speech therapy and we constantly see the teachers taking notes during her sessions. These notes are observations of how she’s doing and this is to be able to do a compare and contrast later to see if the therapy is actually helping her achieve certain goals or not. So if the ABA therapists that you’re going to are not taking any sort of notes, if they’re not communicating with you where your child is at how they’re developing, and if it’s not working, that’s another major red flag. A really strong red flag for me is that there’s no supervision of any of the younger or more inexperienced practitioners. This is something that I’ve seen as one of the biggest problems in ABA therapy from what I’ve seen other parents talking about. It seems like there is a high turnover rate in the ABA community and because of that, they tend to hire a lot of young practitioners that are pretty inexperienced and don’t really know what they’re doing fresh out of the — I don’t know if it’s a college or whatever they go through to get that education — but these less-experienced trainers and supervisors tend to not do the best ABA therapy and not necessarily follow through with the principles and guidelines, which then could ultimately end up to be harmful ABA. That’s a big problem because ABA can go bad, pretty quick and easy. So definitely consider whether or not the people who are practicing the ABA therapy and the clinics are very well experienced and know what they’re doing. Also, make sure that the curriculum that’s being used is very specific and independent to your child. Another major red flag would be if you’re going to an ABA therapy clinic that just does a blanket encompassing ABA therapy for everybody. So for example, if your child is eight years old, and he’s going to ABA, and they have like a little clinic of eight-year-olds, and they’re all receiving the same standard curriculum, they’re all doing the same tasks every day. That’s not good, because it’s supposed to be tailored specifically to your child’s needs. And it’s supposed to accommodate your child’s specific interests so that’s going to be completely ineffective. So make sure to avoid that as well, you might want to also keep an eye out for any sort of positive and negative reinforcement. Again, you want one that would have positive reinforcements. If you see anything that has negative reinforcements, definitely run away as fast as you can — that is extremely damaging to children, I would absolutely not do that. Especially when you see things like a punishment, which is a completely unacceptable form of ABA. No child should be punished in any of their therapy sessions. If you see that, not only should you pull your child out, but you should definitely report it to whoever’s there and potentially to somebody higher up depending on the extent of that punishment.
Lia: The last thing that I want to mention with red flags here — this is a little more contentious of a topic — is the fact that ABA therapy clinics, a lot of them still do focus on getting rid of behaviors that are considered problematic. And the biggest controversy within the autistic adult community is really this component of behaviors being eliminated because they’re not considered neurotypical or they’re considered harmful when they in fact are not harmful. And this is something that might be like focusing on eliminating arm-flapping behavior because arm-flapping behavior is a harmless behavior. When your kid is stimming or doing that self-stimulatory behavior, it’s also referred to as stimming. Hand-flapping is one of those things and it’s just a way that your child is self-regulating their emotions and just helping themselves cope with whatever situation they’re in right now. So if there’s any ABA therapy that is focused on things like reducing the arm-flapping behavior or trying to force eye contact, things like that, those are definitely red flags as well. And it’s definitely something that I would urge you guys to reconsider.
Matt: At the end of the day, I don’t think that stimming should be the target of the therapy, mostly because I think it causes more harm than is beneficial at the end of the day. This basically wouldn’t be any different than if I took away my wife’s playlist when she wants to listen to Britney Spears when she’s really stressed out. And because I don’t find that Britney Spears to be socially acceptable. But of course, in society, that’s exactly what this is basically doing. It’s basically targeting arm-flapping or other stimming behaviors, because it’s viewed as unacceptable.
Lia: And for the record, I don’t listen to Britney Spears. But yeah, to keep going with that train of thought there, it depends on the therapist, and this is part of the controversy — the autistic community that has gone through this ABA therapy and grown up and they’re now adult and speaking back about ABA therapy and how it affected them. There is a lot of controversy with this because a lot of these autistic adults have talked about how ABA therapy was actually quite abusive to them in the sense that they felt that when they were going through ABA therapy, they were essentially being forced to become people that they were not in order to be considered acceptable to the rest of typical society. This is something that has caused a lot of autistic adults to become suicidal, depressed, they have a lot of insecurities. Many of them have become autism activists because of this. And there’s a lot of people that you could actually lookup on the internet and just do a quick Google search as to why they feel this way about ABA. I would urge you to just take that into consideration. Because although there is a component to ABA therapy that can be beneficial, particularly for things like self-injurious behavior, I would like to say that a lot of those therapies can be done through occupational therapy, for example. Some people say ‘well I put my child through ABA therapy because they were really struggling with the self-injurious behavior, headbanging and all that’. My child did headbanging and we got that completely resolved through occupational therapy. So if you find good alternative therapies, that’s something that can help you out tremendously. There are also other therapies available such as floor-time therapy, there’s the Hanen method, which is also considered under very high esteem among the autistic adult community. And there are just other alternatives that you can consider if it’s coming to those more difficult behaviors.
Matt: And I agree, you are able to get many of the benefits through other means. I know that for the time that we’ve spent there, we put in significant time and energy into working with our children and doing a reward system for any achievements that they’ve reached. And we’ve never, of course, done anything as far as any type of punishment. So if one of my daughters will take a piece of trash or cup and throw it in the garbage can, for example, we praise her just like we would any child that we have. So I think as far as focusing on the reward system can definitely help to kind of motivate your child and will help you moving forward.
Lia: And there are many reasons why ABA is considered controversial. And it’s not simply because of the punishment system because of course, that system is not really even being implemented anymore. So that’s an issue with earlier forms of ABA. But current ABA still has a lot of its controversial issues, one of them being the time commitment. Many, many many, many, many, many autistics and non-autistics alike are very hesitant and very against the concept of putting your child into a 10 to 40 hour plus therapy. I’ve heard in some states, they even go up to 60 hours a week, which is absolutely insane to me. The reason we personally did not put our children into ABA therapy was in fact, because of this time commitment in our state, we were recommended 40 hours each and I just personally think that’s absolutely too tough on a child — that’s a full-time job. And kids really should just be kids. I can’t imagine putting them into 40 hours a week of therapy.
Matt: Not to mention both our kids are a toddler. So a toddler basically doing a full-time job, every week with no break. I mean, I think that’s a great deal to basically ask them to complete I mean, 40-hour workweek for most of us is something we complain about, let alone if you are a toddler, and you have no say in that type of therapy. So that’s why I think that overall, we thought that the floor therapy because the kids are basically working with mom and dad in play, they don’t really notice that some of the activities that we are doing are beneficial to a therapy setting. But it doesn’t include a stranger who is coming into the house to try and recreate some of the experiences that we are handling with our children.
Lia: Another aspect of ABA therapy that’s considered controversial is the fact that it is considered to be too focused on eliminating behaviors rather than developing positive behaviors. So for example, typically it may be a target area to reduce or eliminate specific problem behavior. So we mentionned the headbanging, it can be also things that are considered a little milder. So things like tantruming, or if they were running away those sorts of behaviors. However, the reason that autistic adults are particularly against this form of therapy to treat that is that the goal of ABA therapy is to make autistic children look, “indistinguishable from their peers”, that’s from the original text of the creator of ABA. And the issue with that, as you can see why it’s extremely controversial, is because by creating a therapy whose goal and purpose is to make your child appear to be, “normal”, you’re thereby by default, saying that your child is not normal, and something’s wrong with them, something’s broken with them, that needs to be fixed in order for them to be able to be considered a part of the rest of society. So it’s inadvertently othering autistic children, it’s putting them outside of the box of normal society and saying ‘unless we’re able to normalize you, we’re not going to put you back into the box of society’. So that’s another area of controversy.
Matt: Not to mention that basically, at the end of the day, all you’re doing is just masking what is seen from the outside appearance, that’s basically not really addressing any internal struggles or any internal thoughts that these children are having. So they might really be wanting to stim or display some type of behavior but they know that they’ve been instructed not to and through these 40-hour therapy sessions, they have basically been trained, ‘it is unacceptable for you to stim’. So they still have those thoughts, it’s just that they — now they aren’t able to, they aren’t able to act on them, which doesn’t really solve any problem. It’s just creating, I think, more problems overall.
Lia: On top of that, one of the things that I’ve heard a lot from autistic adults is exactly what you’re saying. But the fact that it causes them to internalize these issues, too. So like you said, you grow up being told that this is the way you’re supposed to be, this is what you need to say and do to get x, y, & z. For example, if I want a cookie, I have to do this — but you don’t know what’s going on. In your child’s mind during that scenario, you don’t know if they’re distressed or not, or why they’re doing the behavior that they’re doing. And because we’re not addressing the why behind the behavior, we’re just addressing the outcome of the behavior, then that why question never gets resolved. So another way of thinking about this is if your child is constantly crying, because you don’t know why, right, your child’s just constantly crying. And then you find out that if you give them a bottle, they stop crying, right? So then you learn from that, ‘oh, my child is crying because they need a bottle, that must mean that they’re hungry’. But if you have an autistic child who’s an adult, and they have some other way of communicating through tantruming, for example, sometimes that tantrum is like the baby crying, the baby crying is crying because they need milk, the adult autistic who doesn’t know how to verbally communicate, maybe tantruming, because they don’t know how to communicate what they need. So an ABA therapy, what sometimes happens is they tried to train the tantruming out, so they’ll be like, ‘okay, that’s not an acceptable behavior. So this is what we’re going to target. And we’ll try to do a reward system to make it so that every time that autistic child or autistic adult does tantrum, they will have a consequence, which might be of the lack of reward’. So they might not get the sticker that they want, they might not get the treat that they want. This, in a sense, encourages that individual to stop tantruming. But it’s not addressing the issue of why they were tantruming. So that kid or adult ends up stopping the behavior and on the outside, it looks like ‘oh, cool, we achieved success, our kid’s no longer tantruming, this is great’. But then we find out years later through the autistics who are able to communicate verbally or non verbally, that, in fact, when they went through that they didn’t actually feel like that issue was resolved. They feel like that issue was made worse because what they learned was not that, ‘oh, if I stopped tantruming, I get this. And then my issue is resolved’. What they learned was, ‘if I tantrum, I’m not going to be able to get the things that I need. So I’m going to stop expressing my need for whatever it is whether it’s food or whatever was causing the tantrum, because I know that I’m essentially getting punished with the lack of reward, or I’m getting punished by the fact that I’m not getting the acknowledgement that I want’. And then it puts the adult and child into this learned helplessness mode. And learned helplessness is essentially in psychology, it’s when you feel like no matter what you do, you can’t get the help that you need and you’re kind of like panicking internally. So they learn that ‘you know what, there’s no point in tantruming because I’m not going to get what I want and I’m just gonna have to suffer through this and move on’. And then that’s how you end up getting autistic adults who have more emotional, low self-esteem and stuff when they’re older because they felt like their parents weren’t taking their needs into consideration and they just had to suck it up and move on, because their needs weren’t important unless they felt like those needs were considered typical for their age.
Matt: I agree — I mean, it’s basically psychological games. I mean, that’s basically what you kind of described a little bit. And I think that you’re exactly right, you’re basically trying to, in this scenario, clean out the cobwebs of your life without ever trying to find the spider more or less, because yeah, the spider is going to continuously fester and create more cobwebs.
Lia: Yes, actually, that’s a good metaphor, because you’re using the spider who’s created cobwebs and spiders are considered a pest, right? Most people are afraid of spiders. And in that case, that is kind of like the autism mentality, the taboo behind it that a neurotypical parent might consider their child’s autism to be a spider that is creating webs, which is like this unwanted thing. But you got to stop and take a step back and look at it from the perspective of the autistic person and say, what’s a spider to you might be something amazing to that autistic person, because who knows that spider could be Charlotte from Charlotte’s Web, and he’s trying to weave out messages to you, and you’re never going to get the messages because you keep pulling down the cobwebs. So I know it’s kind of a silly metaphor, but it really, really drives that point home that ABA therapy, I feel like has a lot of good intent, I feel like it can potentially be implemented correctly under a lot of strict supervision and just a lot of rigorous making sure that it’s done properly and there isn’t any of this correcting behavior. But honestly, to me because it requires so much work, I don’t personally find it to be worth it, it’s so much easier and safer alternative to just get those things accomplished through OT, PT, ST, or even things like play therapy, and floortime therapy. And because there is so much controversy around it, I really would encourage you all to just do your research. And what I mean by that is to make sure you’re looking into both sides of the argument. Make sure you talk to autistic adults who’ve gone through it, make sure that you look at the history of ABA, there’s a lot of helpful YouTube channels that talk about it, just make sure you do your due diligence, because like we’ve mentioned many times, it is a huge commitment. And do you really want to put your child through 40 hours of something, if you feel like it may potentially be harmful?
Matt: I agree, I would definitely focus on also being involved as well. So if you decide to put your child into ABA, pay attention to what is being taught what the activities are. And then at the end of the day week, however long you have been observing it take into consideration, ‘okay, is this something that I can see, is my child benefiting? Is my child’s health still good? Have they had any issues or anything to that nature’, and then just wait from there. I mean, we both started the physical therapy program and then at the end of the day, we were able to see progress. And then we were able to kind of take on that task doing kind of our floor therapy at home without actually going to the facility. So I mean, if you start it and decide later on that you don’t need it anymore, or don’t want to proceed with it, that’s fine. But definitely, be involved and make an informed decision based on what is best for your child.
Lia: And I just want to mention really quickly for everybody listening out there. This episode is possibly the hardest episode for us to record because ABA is such a controversial topic, it’s really difficult to talk about it without upsetting somebody. There’s a lot of people who are strong advocates for ABA, and there’s a lot of people who are strong opponents of ABA, it’s one of those topics where you either have no opinion on it, or you have a really, really strong opinion on it. It’s really hard to find that middle ground. So we’ve hoped that we’ve been able to find a little bit of that middle ground for the sake of this podcast. So you guys get a little bit of both sides. Our goal here is not to tell you what to do. We’re simply telling you, what does each person think? Why is it potentially beneficial? Why is it potentially harmful? And why we personally are not considering ABA therapy for our children. At the end of the day it’s your child, it’s your decision to make, we just want to make sure that everyone’s making an informed and educated decision.
Outro
Lia: To review in this episode, we discussed how ABA therapies reward repetition through discrete trials training to target problem areas such as self-injurious behavior. We also touched on the controversy surrounding ABA, particularly how the autism community considers it a form of abuse. And we encourage listeners to consider both sides of ABA before committing to the hotly debated golden standard. Thanks for listening to Embracing Autism. Tune in next time when we tackle the most contentious and controversial topics in the autistic community and answer questions such as what is considered the appropriate language when referring to individuals diagnosed with Autism Spectrum Disorder? Why do some autistic adults hate the puzzle piece symbol? And what’s wrong with calling myself an autism mom or dad? This has been Embracing Autism.
