Applied Behavioral Analysis (ABA)
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.

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Resources

Incidental Teaching – Association for Science in Autism TreatmentDescription
Communication Development in Children with Autism
Learned Helplessness: Seligman’s Theory of Depression
Home of DIRFloortime® (Floortime) – What is Floortime?
More Than Words – Hanen Program for Parents of Children with Autism

Finding the Balance
Show Notes for Embracing Autism Podcast — Ep. 106

Intro:
Lia: In this episode, we discuss the various therapies your child may be referred to after an autism diagnosis, and give tips on how to manage your schedule, as well as what to do if your child appears to hate going to therapy.

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. I’m Lia!

Matt: And I’m Matt!

Lia: And each week we’ll 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: After diagnosis, your child may have been referred to multiple therapies. The most common therapies that you’ll encounter are Physical Therapy, Occupational Therapy, Speech Therapy, and Applied Behavioral Analysis. Now for physical therapy, it’s commonly referred to as PT. This typically focuses on gross motor skills. You might seek out a physical therapist if your child is having trouble going up the stairs, and you need additional support with that. Occupational therapy, commonly referred to as OT, focuses on fine motor and sensory-related target areas. This might be if your child struggles with using utensils, for example. Speech therapy, also called ST, is the focus of speech and language development, teaching communication skills for both verbal and nonverbal, and this might be if your child is having trouble with pronunciation for example. And the final therapy that you might encounter is applied behavioral analysis commonly referred to as ABA. This uses positive reinforcement, strategy, and antecedent behavior and consequences — commonly referred to as ABA technique — to address behavioral struggles.

Lia: That’s just some very basic information about those therapies, we will actually go into more detail about physical therapy, occupational therapy, speech therapy, and ABA in the next few episodes. So if you tune in, we’ll actually give you very detailed examples of what happens during those sessions. But for this episode, we’re just going to keep it a little light and just mention that those are in fact the most commonly prescribed or referred to therapies for autistic children. Usually, we’ll get this referral from either a primary care physician if they’ve noticed that there’s some sort of developmental delay during the milestone checkup. Or you may be referred by your developmental pediatrician who diagnosed your child, if, for example, they were evaluated by an occupational therapist who may have noticed some sort of delay, and then referred you to, for example, occupational therapy. There’s a lot of different ways your child can end up getting this referral, but these are just the most commonly prescribed therapies.

Lia: Now since we will be talking about those things in future episodes, for this episode, we want to focus a little more heavily on scheduling. There’s a lot of common issues that arise with scheduling these appointments and therapies for our kids and we just want to talk about the things that come up the most for us and things I have heard other parents have difficulties and struggles with, and we want to see what we can do to give you guys the best advice and suggestions that we have from our personal experience. Now, probably the biggest complaint that I’ve heard among parents who are struggling to schedule therapies for their children is really the work-life family balance. Most people were saying it was really difficult to get their child to therapy appointments and it was really difficult to make time to go and get them the help that they needed, because they are full-time workers, or they have a really rigid work schedule. And it was kind of difficult to put those appointments in time slots that they would be available to take their kid.

Matt: Yeah, Lia and I found ourselves in this boat multiple times. I think during the peak therapy sessions, it was around four therapy’s a week. During this time, we were both working full time. So we kind of had to divvy it up a little bit as far as who was taking our daughter to what therapy on what day and kind of doing a little bit of tag-team work there. For my job, I was working remotely at the time. So I think on one of the days, we had scheduled physical therapy the same day that we had speech therapy. So I would run our daughter down for her physical therapy. And then I would race home because she would also have speech therapy later in that afternoon, where Lia was waiting at home to take the reins essentially, as soon as we got home with the speech therapy. And if I was late, of course, she would start the speech therapy without me. So for us, it’s really kind of working off of each other’s schedules and trying to find the best solution possible.

Lia: One of the issues that we were having was that when we were scheduling appointments, a lot of the appointment slots were very limited. So we had a choice of maybe two or three appointment slots that we could pick from and when we went to schedule those appointments, we had to make sure that they didn’t conflict with the other appointments. But on top of that, we had to make sure it didn’t conflict with our work schedule. So what I did is luckily at my job, I have two days a week that are dedicated to telework at home. So I tried to make it so that all of my appointments were scheduled on the days that I was teleworking. And then what we did is we split it up so that Matt would take her to one appointment and then while he was doing that, I would be able to set up at home because we were doing a telehealth appointment. And that would get it already so that by the time they got home, I was already situated with the telehealth appointment. And we could just switch straight to that. Now prior to telehealth appointments, because that was just during COVID, we did have some appointments that were back to back physically; what I did with those is I made sure that they were located really close to each other. So one of them was occupational therapy that she had across the street from where her physical therapy session was. And then I called ahead with a physical therapist and let them know that she would probably end up being like 10 minutes late to each of these sessions because that appointment started right after the first appointment ended. And if you talk to your therapist, though, most of these appointments are actually 45 minutes long, but they just build them in for an hour. So they were totally cool with that because they’re saying we don’t use the full hour anyway. So if you’re 10-15 minutes late, it’s not a big deal, as long as you clear it with a therapist in advance. So go ahead and talk to your therapist and see what kind of flexibility they may have. They may be more willing to adjust things than others who really knows until you talk to them. But for us specifically, that was one of the things that we ended up having to do.

Matt: Another approach that you can do is possibly flex hours if it’s acceptable with your employer. I used to be working remote, in which case I would just block out time to take my daughter to physical therapy on the one day a week that it was. This just meant I would work later in the evening and be able to make up my hours at the end of the week. So thankfully, if you’re working remote, you have much more flexibility or should hopefully have much more flexibility with the therapies and schedules. However, right now I’ve transitioned out of that work and I’m in an actual more rigid work environment where I have to be on-site every day. Now, this has created additional complications for us, I was able to talk to my employer and take an earlier shift. So I start very early in the morning, and I get out by around mid-afternoon. So this slightly helps Lia a little bit with trying to get the schedules situated, it’s not as helpful as when I was completely remote, but at least that is one area that I am able to try and modify my schedule to try and accommodate the work life balance as best as possible.

Lia: Another thing that I’ve seen some offices do, but not all offices, is offer evening hours or very early hours that are prior to your typical nine to five job. If you take a look at the schedules at different therapists’ offices, you can talk to them and see what kind of hours they have and if they do offer any of these extended hours. If they do, I would definitely opt for that option rather than going to one that doesn’t offer it.

Matt: As a last resort, you could try and use sick leave for these appointments. However, I think that this should absolutely be a last resort because most employers only have a very small amount of days that you can actually use for sick leave. And even if you start diving into vacation, you’re going to burn through these days very quickly because the therapy starts to stack up really quickly and you might be spending all your leave on just the therapies alone.

Lia: Additionally, if sick leave isn’t an option for you — because I know that’s very difficult for some people to get — there are typically some options with FMLA intermittent leave; this is actually something that I had discussed with my boss as well. So FMLA is the Family Medical Leave Act, and it usually entitles you to leave — it’s typically leave without pay — but it gives you job security. So you can’t get let go of your job while you’re taking leave and you can stack it with things like sick leave or vacation to get paid. So the FMLA, the intermittent style, basically makes it so that you don’t have to use the leave all in one giant chunk — you can use it intermittently. So you can use it basically here and there whenever it’s needed for therapy appointments. That may be an option that you want to discuss with your employer and see if it’s an option. I know technically it’s an option for me, but the reason I decided against it was that you do tend to lose some benefits at work and again, you won’t get your full salary. So it’s not really the best-case scenario. But if you are worried about losing your job and you’re desperate and you need to get these therapies, it is at least an option to consider.

Lia: Another thing I want to mention is what you end up doing really depends on whether you’re a single-income household or a dual-income household as well as whether or not you’re a single parent or a dual-parent household. If you are in a dual-income household, one option that you have that a lot of people actually do take is unfortunately for one of you to stay at home and help your child with all the therapy sessions and then the other one continues to work, that is an option though I know again it’s a difficult decision to make. On our end here, it is actually a goal of ours. Currently, we are dual-income full-time working parents; However, our goal is to ultimately be able to transition to a single-income household so that I can take care of all the appointments and everything that needs to be done. One of the things that you can do like us to try to get to that goal is see if you can find a way to apply to jobs that you can make a little more income to make up for some of that loss. Typically raises don’t go very far, but if you apply to a new job, it’s a lot easier to give yourself a raise by putting in for a higher salary when you move to that job. So it’s kind of like a system cheat that nobody really knows about. But it’s another option to try to do something like that.

Lia: Now, for the single-parent household, it can get a little more complicated, because you may not have that partner to rely on. If you do have that partner to rely on, definitely go for that. Otherwise, you can try to connect with your local community. So maybe with your local church system, if you have any cousins or aunts nearby, or if your mother happens to be nearby, there’s any family or friends available, who might be willing to help you out during that time and see if they are able to bring your child to the appointments. This is something that you will have to grant specific permission to at the facility. So if you have somebody other than the parent, bring the child to therapy appointments, you’re going to have to fill out an authorization form at each clinic. And typically, you’re gonna have to make sure you renew that every six months or so. But it is an option, you can actually have someone else bring your child to the therapies as long as you, of course, trust them, and you have them authorized through the medical facility.

Lia: Kind of along the same lines I’ve seen a lot of parents struggle with how do I bring my kids to therapy, if I have another kid, I don’t know what to do with them. That can be a little bit complex as well. I struggle with that myself, because I have two children who both go to therapies, but they don’t go to therapies together. So I typically have to handle that on my own. There’s a couple of things that I’ve done. Sometimes I will leave one of the kids with my mother who will watch them during the appointments. And sometimes I will honestly bring both of them. And while I drop one off at therapy, I have the other one with me in the car, we go for a little drive, or I might take her out for ice cream or something like that while the other kid is in the appointment. Now if it’s an appointment that you need to be physically present for, some therapists will on occasion, but not regularly, allow you to bring the other sibling in so long as it doesn’t distract your child. I have had some luck with that but I know not all therapists do this. So you’ll have to speak with your therapist specifically and see if that’s something they’re okay with or not. Another thing that you could potentially look into is to see if the local area has some sort of temporary babysitting service in local churches or things like that. I know where I’m at there actually is a local church that does kind of a mom’s day out random drop in for childcare, and they will watch your kid for really low cost while you’re doing whatever you need to do, whether that’s errands or whatever it is, the whole point of it is to help you out while you’re doing those things. So again, check out your local community and see if there are any resources like that they’re available to you.

Matt: And you might have more luck with your boss approving your schedule or a person watching your child on a regular basis if you have a consistent time slot for your appointments. What I’ve done is each week that I would have the physical therapy appointments with my daughter is I would also schedule a month or two in advance. So every Tuesday, for example, at one o’clock I would have my appointment with my therapist. So I could tell my boss that I need to block off this time every Tuesday. I feel like most employers are more willing to make that accommodation. And if you need babysitting, at least it’s at a set time, which would hopefully be easier to accommodate.

Lia: I also tended to schedule near the one o’clock time and I did that specifically because it is close to the lunch hour break. So that’s another technique you can do is keep it close to your lunch hour breaks so that you can include that as part of your time that you need to commute to and from the appointment. Or if you want to include your break, essentially, as part of the time that you’re using for therapy, if your employer lets you do that, I would. I would definitely take advantage of that and just say, you know, I’m going to skip lunch and use that time for the appointment instead. Another thing to consider when you’re scheduling these time slots — so Matt mentioned getting a time slot that’s consistent. So for example, a one o’clock slot, I know I always have therapy at one o’clock on Tuesdays. That’s a really good technique, but you want to also consider your child’s age and whether or not they’re taking naps or whether or not your child, if they’re an older kid, has some sort of specific need at that time that you might be interrupting. So for example, if you have a kid who is really determined to have their Nintendo Switch time at 11:30 every day because that’s their routine and they’re used to it, then you may not want to schedule a therapy appointment at that time because he’s probably not going to be cooperative during the session and he’s probably gonna have a meltdown or be really upset because you disturbed the routine. It’s the same thing with naps. If you have a kid who is on the younger side of things, and they’re still napping like ours were, you really want to be careful about the time you pick for therapies. I know for us when we first did our therapies, it was kind of a ‘you get what you get’. So we took the time slot that was available to us and our child initially struggled a lot. She would kind of just lay down on the floor during physical therapy and she wouldn’t move around. She didn’t want to participate in something — she started crying. And we knew it wasn’t because she didn’t want to do the activities it was just because she was overtired. Once we switched her schedule to align better to her nap time, she actually thrived in physical therapy, she absolutely loved going, she got along great with a therapist, and actually ended up graduating out of the program. So that’s definitely something that can make or break it, I would definitely take into consideration your specific child’s needs for scheduling and try to accommodate as best as possible.

Matt: Now, we’ve been talking primarily if your child has a little bit younger, but if your child is already in the school system, they’re also able to get the therapies given to them while in the regular school day, which wouldn’t disrupt your work schedule. So they’d be able to get the physical therapy, speech therapy, occupational therapy in the school, and it shouldn’t hopefully disrupt your schedule.

Lia: Yeah, the school system will typically already have those therapists available there for you as part of your accommodations if you have an IEP plan and those accommodations, that should be included. But it kind of depends on their specific evaluation of your child and whether they find it necessary for your child. So I’m not 100 percent sure what you would get, it would depend really on that analysis. And it may not agree with what your developmental pediatrician said, because their analysis is a separate one. And they don’t go by your pediatrician, they go by their personal assessments. But it is something you can try and it is during the workday so it wouldn’t affect you whatsoever and it would just be while they’re at school. Now that is also something that applies with ABA facilities. Although personally, I am not someone who does ABA therapy — and I’ll talk more about that in the ABA episode — it is something that is available at schools because the ABA therapists will typically come to the school and they will do it in that way. Sometimes they’ll pull your kid out, or they might be involved in the school itself while your kid is in class. Different places do it differently but that is another type of therapy that goes to the school as well as the home. So there are options there.

Matt: Now, if you’ve already tried some of the things we’ve mentioned, as far as trying to flex your time at work, trying to shift to a fully remote job, finding family friends to take any child to therapy or babysitting, and it still doesn’t work, another approach that you can try is to see which therapy is most critical and what therapies might be able to be worked on at home. So in our experience, our daughter had gone through multiple physical therapy sessions and had improved but we weren’t able to accommodate with our schedule her PT sessions anymore. So what we were able to do was talk to the physical therapist and try and find things that we were able to work on at home, and then work with her on those areas. So an example was she needed to work on some of her core strength. So we were able to use cardboard boxes to create a tunnel for her to crawl through so she would still be able to have small activities that would have still been fitting in the physical therapy realm.

Lia: The other thing to consider there is prioritizing which one of those appointments is the most important for you to keep and which one is worth doing at home. So there are some things that you can do at home. For us physical therapy was one that we actually thought we could do at home because it was one of her strength areas. Out of all the therapies that she had, this was the one she was making the most progress with, we didn’t want to just cut her off cold turkey. So initially, we just started doing instead of every week, we slowed down to every other week. And we worked closely with our therapists to make sure that the therapist was in agreement that ‘yeah, these are some things you can handle at home, I feel comfortable with releasing her and discharging her out of the program’. So you can talk closely with your therapists, get their feedback and see what they’re thinking. And then specifically ask them, say, ‘I can’t really manage all of these appointments. I’m thinking of scaling back on a couple of them. And this is what I’m considering what do you think’. And then while you’re having that conversation, say, ‘I am absolutely willing to do some of these things at home, what are some activities that I can do that kind of imitate the therapy that she’s getting here?’ A great therapist will help you with that. Our therapist actually specifically looked for things that we could purchase to have at home to help her. So one of the things was, for example, an inflatable bounce house that we got her. She struggles with jumping and she’s always been delayed in jumping so that was an item that they referred us to and I was able to purchase it and so now at home when we do at-home physical therapy, we might have her bouncing in the bounce house. Another one for her was working on steps. Nowadays, every household has steps you don’t really need to go to physical therapy for that. So we just practice marching her up and down the stairs and using the techniques that physical therapists gave us. So there’s really a lot of options for you to do this. And it’s the same with occupational therapy, speech therapy, all of these therapies have things that you can do at home, just talk to your therapist prioritize based on your needs, and ask them how you can make some sort of therapy room at home where you can practice some of the techniques that they’re doing during the therapy sessions just at the comfort of your home.

Lia: And another thing to consider that has been especially helpful now during the covid 19 pandemic is telehealth options. This wasn’t really an option prior to the pandemic, but now it’s actually available pretty widely. So I have taken a lot of advantage of telehealth. I have done as many of these appointments via telehealth as possible with the exceptions of the ones that I think they really need to be present for. But when you do telehealth, you have the convenience of reducing the time that you need to take off because you no longer have to commute. You also have the flexibility of scheduling that time around your breaks. So if you happen to work close to where you live, if you’re the type of person that can go home during a lunch break or something like that, that is something that you could easily fit into your work schedule since most of the appointments are no more than 45 minutes long. The other great thing about telehealth is it kind of coincides with transitioning over to at-home therapies. So if you did want to eventually try to do some therapies at home by creating your own little therapy nook- like we have in our basement, the telehealth is a great transition way of doing that. It’s kind of like taking off the training wheels of going into a physical location for therapy versus bringing that therapy experience back at home because you’ll have the therapist watching and observing and telling you what to do with your child. But at the same time, you’re practicing doing it. So later on, if you transition out, you’ll already have done it, you’ll know what it’s like. And you can keep doing that without having to actually schedule appointments from that point on.

Matt: Another thing to consider is if you’re having trouble trying to schedule multiple therapies in different areas, and if your child is still under the age of three, is you can lean on the infants and toddlers program. I know for our local school district, they were able to, at our request, bring out a physical therapist, or a speech therapist whenever we’d meet with infants and toddlers, which was I think, every other week. So rather than us trying to schedule a separate physical therapy appointment, we were able to work with the infants and toddlers and have one brought out to your residence which could help with your scheduling struggles.

Lia: The great part of that is that you get it on an as-needed basis. So if you feel like your kid needs physical therapy one week, but not the other, you can go and get it through your infants and toddlers program, which is at no cost to you. The other great bonus of that is at least with our local program, we are able to schedule both a physical therapist and a speech therapist at the same time and the same appointment where they’ll both kind of talk to me back and forth in one group that will knock out an additional hour of therapy. So instead of having to see an hour of occupational and an hour of physical or an hour of speech, you can have one 45 minutes to one-hour slot where you touch base with both the physical and occupational therapists in one sitting.

Matt: Now for us, we’ve tried to focus on combining as many therapies as possible. We’ve really tried to focus on the concept that quality is better than quantity. So by us focusing on the areas that she really needs to improve, we feel that she is better off improving overall, as opposed to the number of therapies we could schedule. So if she’s not necessarily benefiting as much from physical therapy, we tried to work on physical therapy at home if it was still needed, rather than scheduling that time slot and overwhelming ourselves in the process.

Lia: And also keep in mind that it’s not just the parents who get overwhelmed in this, it’s actually the children in many cases who are feeling overwhelmed as well. We want to make sure that your kid is actually thriving in their therapeutic environment, that they actually enjoy where they’re going. And if you see that they’re having a really hard time or they meltdown every single time or they just aren’t enjoying the process, that to me is a sign that they probably shouldn’t be there; you might want to consider doing something else. I know for us, our child initially struggled really hard with one of her occupational therapy sessions. I always say give it the good old college try, give it two, three weeks or sessions of trying it out to see how she does. But if they are still struggling and not really wanting to be there, maybe consider different therapists and see if they have a better chemistry match. If that still doesn’t work, and your kid really just can’t stand these therapies, just consider cutting them and trying to find an alternative, whether that’s doing it at home or doing it through some sort of floortime therapy that you can do through play. There are other options, there even are actually things called play therapy that you can try as an alternative. These are things that you can essentially watch videos of on YouTube if you need to, and just try to do it at home. You don’t even have to include a therapist. But always I would recommend that you at least consult with one so that you can get an idea of what your child is specifically benefiting from and then see how much of that you feel like you’re capable of doing at home after hours when you’re not at work.

Matt: And I completely agree if you see that your child is getting extremely frustrated and downright hates therapy, I would take a step back because the quality of therapy that you’re going to get for your child isn’t going to be worthwhile to continue going there in the first place. It’s always focused on trying to help your child move forward. So we need to make sure that we always keep our child’s emotional state of being in mind.

Outro:
Lia: To recap, In this episode, we discussed why more therapy isn’t always the best option and how switching to telework, flexing your hours, or relying on a caregiver can help you better manage your therapy schedule. Thanks for listening to Embracing Autism. Tune in next time where we will go into a deeper dive into what occupational therapy entails and answer questions such as, ‘how can my child benefit from occupational therapy?’ ‘Are there common target areas for autistic children?’ And ‘what kinds of skills can I expect my child to gain?’ This has been Embracing Autism.

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Resources:
Family and Medical Leave Act (FMLA)
Home of DIRFloortime® (Floortime) – What is Floortime?
Floortime Play Therapy for Children With Autism