Help Your Child with Sleeping Problems – For Individuals with Autism Spectrum Disorders

Intro: This podcast is brought to you by the LeafWing Center. Helping children and families since 1999. Brought to you by the Clinical Treatment team at the LeafWing Center, this is the Autism Parent Helper Podcast.

Manjit Sidhu: Hello everyone and welcome to LeafWing’s podcast. My name is Manjit Sidhu and I am a BCBA with the LeafWing Center. And with me here, I have my colleagues.

Sevan Celikian: Hi everyone. My name is Sevan Celikian. I’m a board certified Behavior Analyst at the LeafWing Center.

Rei Reyes: Hello everyone. My name is Rei Reyes. I’m a BCBA for the LeafWing Center.

John Lubbers: Good greetings everybody. Manjit, Sevan, Rei and everybody listening. This is John Lubbers and I can’t wait to talk about today’s topic. It’s a very interesting topic on sleep.

John Lubbers: So guys our topic today, like I said, was sleep and it’s an issue that we encounter often with our clinical practice. Parents will say bring to us concerns about their child, son or daughter with sleep issues. As we’ve delved into this topic a little bit you know, for our parents, we have noticed that, a little bit about what the research says about sleep problems and of course autism spectrum disorders. In your experience guys, have you heard this much clinically and what are you hearing about this from your families?

Sevan Celikian: Yes, absolutely. Sleep is a really significant issue that a lot of our families deal with. In fact, typically developing preschool age children deal with sleep problems as well. The research shows us that approximately about 25% of typically developing preschool aged kids will experience some sleep problems and these are usually associated with things like bedtime resistance, delay of sleep onset, nighttime awakenings. We’ve also found that there are three categories of sleep problems and these have been identified by the American Academy of Sleep Medicine, also by the American Psychiatric Association and these include Dyssomnias which comprise of sleep onset delays and nighttime awakenings. Parasomnias which include behaviors involving motor and autonomic activation, night terrors, repetitive rhythmic behaviors, things like that, and also sleep disorders secondary to a physical illness or other psychological disorder. For our purposes though most of the literature that we reviewed and in our experience, and I’m sure you would all agree, the focus is really the Dyssomnias in both typically developing children and children living with autism.

John Lubbers: And Sevan if I can just interject for a second for our parents, I mean really that lot of that went over my head as well. Would you say that we could probably describe those things with what they’re described in the literature is like co-sleeping and that is when the child sleeps with the parent. Either the parent needs to go to the child’s bed or the child goes into the parents’ bed. Or prolonged sleep onset delay, which they sometimes refer to as S-O-D meaning that you put a child to bed and it takes them hours and hours to fall asleep. Or even they talk about in frequent and prolonged night wakings so the child wakes up many times throughout the night and either is awake in their own room or comes over to the parent or parents room. And then last but not least probably our least favorite one on our weekends when we’re trying to sleep and get rest from parents. That is from our work week is we refer to as early morning wakings, Right? Where our kids get up at four or five o’clock, six o’clock in the morning.

Sevan Celikian: Yeah. I think you nailed all of them, John. And that’s a great question. You know, parents of children with autism don’t commonly express all these issues related to sleep that you pointed out. Resistance going to bed at an inappropriate time, difficulties initiating the sleep, exhibiting nighttime or even early morning wakings like way too early. Kind of like where you’ve pointed out and co-sleeping as well.

John Lubbers: Even raising my two. One was easier to teach to sleep on her own and the other was a little more difficult, you know, and I think you threw out the statistics something in the low 20s or the 20%.

Sevan Celikian: Typically. Yeah. For typically developing children, although for children with autism that figure is way higher. In fact, the research shows anywhere between 44 up to 83% in school aged children.

John Lubbers: I saw that number 83%. That’s huge. So, yeah.

Manjit Sidhu: That’s very high.

John Lubbers: So somewhere between one half to three quarters of our kids with autism spectrum disorder have some difficulty with sleep.

Rei Reyes: Yes.

Sevan Celikian: Correct. High figure. Yeah.

Manjit Sidhu: You know, and we know that not getting a good amount of sleep can lead to so many other issues. Irritability tantrums, aggression, anxiety even. So getting a good night’s sleep is pretty important.

John Lubbers: You know, I saw that in the literature as well and I found that very interesting. I would have never really kind of connected the dots so much as a clinician. I thought that was something that helped me clinically from a clinical perspective is that the sleep issues could tie into, they were saying they could tie into self stimulatory behaviors. So meaning that kids that maybe didn’t sleep that well that night were engaging in more self stimulatory behavior or like you said, tantrums and all the other

Manjit Sidhu: Impulsivity.

John Lubbers: Yes. It seems logical because it certainly applies to us. You and I and everybody else out there. It seems logical to that if you were sleepy, you didn’t get enough sleep that night before or the previous week’s worth of sleep time that it’d be difficulty to pay attention. So any treatment time that were provided on a day that were a child didn’t sleep that well that treatment time could also be affected. So, when I say treatment I’m talking about ABA, I’m talking about public school, I’m talking about speech therapy, occupational therapy. Any of the treatments that we provide for our kids on the spectrum are individuals on the spectrum. Those could all be effected, likely negatively by sleep deprivation.

Rei Reyes: That’s absolutely for us. You know, who work and a school setting. We often hear a warning from the family like, oh, my son wasn’t able to sleep last night, so he’s going to be a little cranky today at school. And more often than not, it is a pretty accurate warning. The child will be different that day at school. And for those of us who work in the home setting as well, late in the afternoon, we’ll hear the same warning and going, behold, it does affect the child very negatively in terms of how they will be responding in the ABA session.

Sevan Celikian: And I’m sure that the parents and caregivers listening out there will also agree that poor sleep quality in children can be taxing on parents as well. It can encourage their family stress, the parenting burden. So it could really have a bleed through effect. And that’s also kind of worth noting as well.

John Lubbers: So how should we talk about our topic today guys? We reviewed a couple articles. There’s one assessment involved in this and then there’s a couple intervention studies. How should we talk about this for our listeners? So how should we set this up for them?

Sevan Celikian: So for our listeners, our main goal is to provide as much information and research and strategies, maybe even some interventions that you may find useful with hopes that this will benefit the issues that you’re experiencing with your child or with your loved one. So we do have a great article that we want to dive into a little bit. This article is called an Individualized and Comprehensive Approach to Treating Sleep Problems in Young Children.

John Lubbers: It was published in the Journal of Applied Behavior Analysis, right? And it was by Jean Hanley andBo Bolo. I’m hoping I’m getting his last name correct. And that was 2013?

Sevan Celikian: Yes, 2013 out of the Western New England University. And the participants included three children between the ages of seven and nine. All of them boys and two of them were living with ASD, Autism Spectrum Disorder.

John Lubbers: Got it. Okay.

Sevan Celikian: All of them utilized parent based interventions, parent implemented intervention. So that’s worth noting as well.
John Lubbers: Got it. The other article that we’re looking at that we’ll talk about in a little bit was the article by Mike Blanqui and Hasty and the article was entitled the Effectiveness of Function Based Interventions to Treat Sleep Problems including Unwanted Co-sleeping in Children with Autism. We are, you know, typically very aware of family preference practices. I think it’s interesting to point out the part of this article title is including unwanted co-sleeping and they went on to discuss in their article that there are some families that do want to co-sleep and they don’t see it as a problem. So I think the article that we’re talking about this Nikolay article as well as the Jean article both are looking at this problem from the perspective of parents who don’t want to engage in co-sleeping.

John Lubbers: So if you are listener out there, somebody who co-sleeps and you don’t think it’s a problem, then really you can kind of gloss over that. The Jean article I was just talking about was interesting and had seven students or seven individuals or seven participants. The Nikolay sorry, sorry. Not the Jean. Yeah, the Nikolay article. Thanks guys. The Nikolay article had seven and it was based in New Zealand. We have one in New Zealand, the other in New England and I’m probably gonna mess those up higher recording but it had some really interesting information and then I think both of the articles looked at assessment and they looked at function right. That’s what we’ve talked about in previous podcasts but that’s important to look at, to assess first of all, and then to look at the functions that the behaviors serve and then to base intervention on those functions. So I found both articles really helpful.

Sevan Celikian: They were super interesting and helpful. And to the parents that are listening out there, it’s really important for us as behavior analysts and it’s really important for an effective intervention to be function-based and to be individualized with any behavioral issue. When we’re talking about sleep, there’s a lot of different factors at play. There are behavioral factors, there are environmental, physical factors different functions, for the challenging behaviors. Maybe social attention is what’s contributing to your child waking up, opening your door and wanting to co-sleep. There might be physical factors, there might be sensory or tangible factors. So these are really important to determine, either on your own or preferably with the help of a behavior analyst or other practitioner. And what that will do is help inform the most effective intervention possible for the client, for your child. So what this study used to collect some data. And actually both studies used similar approaches that use sleep diaries and they use infrared nighttime video and they also used the set or the sleep assessment treatment tool. So maybe we can talk about those a little bit since these came up in both studies and they were both pretty effective in collecting baseline data and helping to inform the intervention.

Rei Reyes: Yeah, let’s go over the S-A-T-T or the SATT. So basically it’s an open ended functional assessment interview designed to identify specific sleep problems.

John Lubbers: Can I interject really quick Rei?

Rei Reyes: Sure John.

John Lubbers: So for our listener out there, the SATT is the sleep assessment and treatment tool and it looks like it was developed by Greg Hanley or I’m assuming it’s Greg Handley, GP Hanley. And it looks like it might go back as far as the original version, 2005.

Rei Reyes: Yes.

John Lubbers: Okay, excellent. I’m sorry. Right, go ahead.

Rei Reyes: Oh, no problem. So it looks into the environmental variables as well. The contribute to sleep problems observed. So it looks into the history of a sleep problems, figuring out sleep goals, identifying sleep problems like bedtime routine, noncompliance, delayed sleep onset night awakenings or and early awakenings. A description of antecedent conditions.

John Lubbers: It does this in a nice way. It asks good questions.

Rei Reyes: Yes. It’s a very structured interview. I was looking at it the other day and it’s information heavy and you can really use it to develop a plan, you know, how to tackle a whatever sleep difficulty a loved one may be going through or the family may be going through.

John Lubbers: Yeah. For example, one of the questions it says, does your child have difficulty going into the bedroom or once in bed, does child have difficulty falling asleep? You know, and it kind of follows up on those questions.

Rei Reyes: Yes. let’s see. It identifies the child’s current sleep schedule and likely items, events, interactions that appear to help the child to fall asleep. So it’s also looking into what works to help my child fall asleep and stay asleep. It also identifies a topographies or behaviors of a possible interfering behaviors. So what they are, how they look like and all those and likely reinforcers for those behaviors. And also, which I like here for the SATT is it offers descriptions of treatment options from which parents can choose from. It’s like a menu of about possible things to do, which mean if for treatment planning, it’s good to have that in front of you already so you don’t need to do further research or at least you have already the information to guide your further research if we want to go that route.

John Lubbers: So question guys, when we talk about topographies and interfering behaviors, what are we talking about there?

Rei Reyes: From what I’m getting, it can be anything that the child may be doing. It can be doing stereotypical behaviors or listening to music, I guess in the middle of the night or playing around with toys. And the thing that is, I guess the opposite of being asleep.

Sevan Celikian: Vocalizing, getting out, walking around, sitting.

Manjit Sidhu: Engaging in self stimulatory behaviors that they normally would.

Rei Reyes: That’s why the SATT really wants to have an operational definition of what exactly those behaviors that we’re looking into.

John Lubbers: Did we see mention of electronics, you know, iPads and in those types of things? Or would it just kind of focus more on child generated behaviors like asset self, stimulatory behavior, hand flapping, those kinds of things? Talking?

Manjit Sidhu: I don’t think I recall about electronics.

Rei Reyes: Yeah, I think for the study not necessarily, but you know, when we apply this, let’s say in our own practice, I can easily name client that has those behaviors, you know?

John Lubbers: Right.

Rei Reyes: And again, we still have to figure out the function of those behaviors and each one can have their own.

John Lubbers: Yeah, I have heard clinically, this is just clinical recounting, I’ve heard families come to me and say my son or daughter will get up in the middle of the night, midnight, one o’clock in the morning and start playing video games or get on their iPad or what have you thought it was interesting because just to a comment here an observation, both articles really looked at these problems, behavior analytically, so they assessed them, they intervened on them. There’s a whole lot of literature that are developing literature that is sort of non behavior analytic that when we come to the end of our podcast today, I think I’d like to talk a little bit about, but that’s where I started to talk about this idea of electronics and what’s going on and what I’ve heard clinically speaking but it’s interesting that we, they didn’t really observe these. And again, one of the articles was 2013 so it was like seven years ago at this point when they were probably writing this, I don’t know if iPads were as prevalent then as they are now and tablets I should say.

Rei Reyes: Tablets in general, I think.

John Lubbers: So. Okay. These are two fantastic articles

Sevan Celikian: Right on. So they also used a sleep diary and this was for parents to document some basic data around sleep time such as the time that they’d been, their child’s getting night when the child actually fell asleep. Also the amount or number of night awakenings and resumption of sleep, the time of morning awakening and also any naps during each day or each 24 cycle cause that could play a role with sleep as well. The value of sleep, right?

John Lubbers: It alters the value of sleep, that means to our parents. And you know, our folks there is if you take a long nap in the middle of the day, going to sleep at night is like less important to our kids as well as to us. And I can tell, I definitely noticed that with my own children and a lot of times you’ll hear your pediatricians recommend. Okay, you know, might be time to stop taking a nap no more naps. And I forget, that’s what around varies from child to the child with a typically developing kid, but anywhere between one and a half and three years old, four years old, something like that. When you start fading away from naps, each child is different but I think logically speaking as well, our kids with ASD, we need to kind of keep that in mind as well.

Manjit Sidhu: Right. And even how many naps you’re taking throughout the day sometimes kids can take one longer nap versus three shorter naps of the day. You can kind of adjust those things around too.

John Lubbers: And I guess while we’re talking naps too Manjit, those little times when we’re driving like to and from school or out to something and they sleep in the car.

Manjit Sidhu: Yeah, exactly. Those count.

Sevan Celikian: So since these studies both used like a research environment to carry out the interventions, the baseline data, they also use infrared nighttime video, which is basically a high definition cam quarter with infrared illumination. It was placed in kind of a discreet location in each child’s bedroom. And what that would do is just record their nighttime behavior and it would help the parents and the researchers track how many times were they sitting up in the night, how many times were they getting up walking out of bed. So the purpose of that was mostly to complement the information that was being obtained from the sleep diaries and for the researchers to more precisely measure the sleep interfering behaviors, although not practical for most intervention settings. It is worth noting that these studies use this method to capture more accurate data, more reliable data.

John Lubbers: Yeah. I think it’s more common that in sleep studies neuro-typical in like with adults, a lot of these sleep clinics will use video to evaluate. So it makes sense like I think you’re saying some on a little bit in this is it may not be super practical for a home based setting to set up a camera to track. Although it is a possibility as well, especially if some really accurate data are needed but it was an interesting, I found that interesting as well, the camera and it was an infrared camera so it would record in the dark.

Sevan Celikian: Yes. So all of these methods were used to collect baseline data and to inform treatment. So this was all part of the functional behavior assessment. This was used to help identify what factors were contributing to children’s sleep interfering behaviors, their sleep onset delay, and then interventions were formed for each child, all three children.

John Lubbers: So can we talk a little bit about the assessment and the results of that for the kids? So one of the things that I noticed that popped out to me, so I’ll just throw it out there for discussion sake if you don’t mind guys. One of the things that I found interesting was with most of the kids, most of the participants in this study, there was the function of attention. Did you notice that?

Sevan Celikian: Yes. In both studies, almost all the participants had social attention as one of their primary functions for engaging and sleeping interfering behaviors. That was interesting and not surprising either.

John Lubbers: Yes. Yeah, yeah, yeah. Not surprising, very intuitive. We would think that but what that means for our listener is that the child was performing the behavior, whether that be co-sleeping or waking up early or going to bed late or any of those things that would happen for attention and likely parental attention so I found that really interesting. And then there were a couple of others. I think another thing that I found interesting is probably the majority of the participants, if we added the seven and the two, we have a total of nine, the majority of the participants, the sleep problems that each one was experiencing served multiple functions. So in addition to attention, sometimes it was tangible, like in the case of Billy, one of the participants in the Maclay. Yeah. Billy performed the behaviors for attention and tangible access to a tangible or a bottle. Same thing with Lucy attention and maybe bottle, you know, as well. So it was kind of and that was the nighttime waking behavior was for access to a bottle as well as attention. So I think that was kind of interesting to me. It started to see some pattern there for our kids.

Rei Reyes: Yeah. And I’m comparing the participants in both studies. And one thing I note is that for the gen study there were older children, like if I’m looking at it right between seven and nine years old, right. The one with seven participants were much younger.

John Lubbers: Two to five. Yeah.

Rei Reyes: That’s why we’re not seeing the tangible function for a bottle milk for the other side. Yeah. That was an interesting comparison right there. It’s looking at these two groups. Yeah. But I agree, it is a lot of attention-based difficulties for sleep behaviors that these few studies have looked into.

John Lubbers: Yeah. A little bit here and there, escape and didn’t see much for any of the other functions there. But it was mostly attention, escape and access, you know, tangible

Rei Reyes: And escape meaning really escape from the bed, they don’t want to be in the bed. That’s what they mean by escape.

John Lubbers: Exactly. So what do you think, guys. So we’ve kind of described the problems a little bit. We’ve described the four basic things, what are the four problems for our parents? We talked a little bit about the kids, and what they were experiencing. Should we talk a little bit about interventions or what do you think? Where should we go next with this for our families?

Sevan Celikian: Yeah, that sounds good. So yeah, we can jump into the gene study a little bit. Talk about the individualized interventions.

Rei Reyes: Can we rewind a little bit here? I think we should bring it up now before we get into the ABA component but it was mentioned in one of these studies that most likely families who will refer the problem to their pediatrician, to the family doctor.

Sevan Celikian: Right, right.

Rei Reyes: But the problem is quite a good number of doctors really don’t get a lot of training when it comes to addressing pediatric sleep disorders or problems. And the good majority of them are getting prescription medication for sleep.

Manjit Sidhu: Just to add to that Rei I read that it’s about five hours of training that they get for addressing sleep problems. Yeah.

Rei Reyes: And around 50% of the prescription given are for young kids they get prescription medication to fall asleep or help them sleep. And about 75% of doctors have a recommended over the counter sleep AIDS. So we’re looking at a huge number of medication being given to children, having sleep difficulties. And that’s why I guess that this study focusing on ABA based interventions is quite important.

John Lubbers: Right. Yeah.

Rei Reyes: More often than not, those really don’t work and that’s what we hear from families working out there in the field that, Oh yeah, my child is on Benadryl or melatonin or something else, but it doesn’t really work. It doesn’t really work here.

Sevan Celikian: Thanks for pointing that out Rei. A lot of times, medical doctors will take an obviously a medical approach or sometimes a pharmacological approach to addressing these issues. And it’s interesting because the parents in both studies reported that the child and the participant was taking some sort of either medication or supplement to aid in sleep and towards the end of the studies and that follow up, most of them were able to taper off at the parents’ discretion, the parents’ decision. They tapered off the medication.

John Lubbers: Yeah, that is a great point. It really is a great point. Assuming that a lot of us, myself included, tried to use medication only as a last resort. I think that it’s very good point, Rei, thanks for bringing that to the table that we definitely Manjit and Sevan. Thank you for that because I would be one of the listeners that we would go, well, you know, are there some other approaches or there are some other ways of getting going about this. So, okay.

Sevan Celikian: So I’m sure we get into those approaches.

Rei Reyes: So let’s get into that.

John Lubbers: All right, great.

Sevan Celikian: Okay. So we covered assessment. We talked about the participants. Let’s talk about some of the individual treatment that were created for the three participants in the gene study. So Walter, one of the participants.

John Lubbers: Sevan, can I interrupt really quick?

Sevan Celikian: Yeah. Please.

John Lubbers: Do you mind if we talk about the interventions sort of globally and then specifics?

Sevan Celikian: Okay, great.

John Lubbers: So our parents kind of have a little bit of an orientation and so we can kind of provide a little bit of an orientation. One of the interventions in particular in the Maclay study was called the Systematic Fading of Parental Presence and Planned Ignoring. So what that means is they started to remove the parents from the beds or whatever was providing attention, the parent’s presence. They started to cut down on the amount of time. And then they also introduced that when the child came to the parent in this situation that the parent would start to kind of ignore or not address the child a little bit so that they weren’t really getting that attentional function, it’s easy. Another thing was something called the grow clock. And this is based on sound ABA research. This is a clock that helps kids discriminate when it’s sleep time and when it’s wake time. So the clock really served two purposes and one was to say, okay, the POC indicates this, that is sleep time. And then the clock indicates that and now it’s time to be awake. You don’t need to be asleep and in your bed.

Sevan Celikian: That was a really cool, fun looking clock. It had like a digital image of a son, you know, during the daytime to signal, Hey, it’s awake time, it’s daytime right now. And then, a moon and stars for nighttime. Some of them had little modifications or customizations where they would kind of have like a countdown of stars to show when it’s time to wake up. So that was a pretty neat a device that they use the grow clock and the logic behind it, I think why they used it in some of these cases was because they found that the research showed that a lot of times children, especially children with ASD have difficulty figuring out when it’s time to go to sleep and when it’s time to be awake. So that was kind of a signal to help them, you know, differentiate.

John Lubbers: Totally logical, right?

Sevan Celikian: Yeah.

John Lubbers: Totally logical. And it similar kinds of things that we do, green light, red light, those types of things. School-based indicators, like, okay, it’s time to be seated. It’s time to be out of class. It’s quiet time. It’s a fun time. So this is really just a clear visual visual cue.

Manjit Sidhu: A clear visual cue.

John Lubbers: Yeah, exactly. So love that. And then of course, last but not least is our positive reinforcement which we really are big advocates of and it’s part of our belief system in ABA that we reinforce the behaviors that we want and that we either don’t reinforce or do other things with the behaviors that we don’t want. So positive reinforcement being one and that came in the form of praise and tangibles and all kinds of things and it was really individualized and should be individualized to what your child enjoys.

Sevan Celikian: Exactly. If the child’s goals, the sleep goals were met for the previous night, that positive reinforcement was applied right. At wake up time. And if the goals were not met, then it was withheld.

Rei Reyes: Yeah. For the positive reinforcement treatment actually I’m looking at this study is specifically just strengthened behaviors this solo sleeping behavior. If they did not sleep, if they did not closely, that’s when they get the positive reinforcement in the morning.

John Lubbers: Did it describe Rei what kind of reinforces were given?

Rei Reyes: I’m just gonna read off the article directly. It says the contingency with explained to the child verbally and via social story, the morning rewards selected for each child was based on the outcome of the FDA. For example, if the child’s sleep disturbance was reinforced by social attention, social attention was provided for independent sleeping and the like.

John Lubbers: Makes sense. So the idea of being like this behavior is serving an attention function. I am getting up in the middle of the night because I want mom or dad’s attention or one of the other if I sleep through the night, then I’m going to get mom or dads or one or the other’s attention in the morning based on contingent on dependent on my successful sleeping through the night. So, yeah, I think what’s implied in there, and I think what we can logically infer or deduct from it is that they were function-based. The positive reinforcement was function-based and it was individualized by child. So mom, dad, caregiver out there in the audience. What that means to you is you know your sons and daughters best. If you or you’re the children in your care. If you know that one child likes these types of things, ABC and D and the other child likes XYZ , you would use those specific things that they like to make them reinforcers for the sleep behavior. Okay.

Sevan Celikian: Awesome. Another intervention that was used particularly in the gene study that we touched on was the parents providing ample access to desirable activities and items before they bid good night. So this is kind of like a non-contingent reinforcement approach with the idea being that in order to lower the motivation for sleep interfering behaviors, playing, asking questions, getting up at night, seeking attention, repetitive behaviors. One of the intervention components was to set up a time before sleep in which rich social interaction occurred between the parents and the child, where there was story time asking and answering questions, access to books, maybe video games. Once the good night was bid though these were withheld. So the purpose with that was to really pile on all of that fun stuff and get that going before the bid good nights so that once it’s time to sleep, hopefully the motivation to engage in all these behaviors will be a bit lower.

John Lubbers: Excellent. Yeah. So we talk a little bit about the specifics, like any specific [inaudible]

Rei Reyes: Oh. I’m not sure if we’ve talked about this but for the asleep onset delay. So these are the times when the child is not able to sleep right away. What they did was they adjusted the sleep time, right. So for example, if they send their child to bed at nine o’clock but the child does not really fall asleep until 10. They bid good night around 10 o’clock. Yeah. So the child can sleep right away and then move back systematically.

John Lubbers: Correct me if I’m wrong, I think I remember that was when we were talking about where a parent problem would be, or a parent concern would be, will I put them to bed in two hours?

Rei Reyes: Exactly. Exactly. Which really makes sense. I sent him to bed when they know when they can’t sleep. But yeah. Yes.

John Lubbers: And I was looking at another one in particular in the Maclay study. The particular participant was Matt and it says the Matt was typically taken to bed at 7:00 PM, so 7:00 PM and again remember these are two to five year olds, so if you have a 12 year old and you’re thinking 7:00 PM, that’s crazy but what Matt’s parents were experiencing was that he would get up between 5:45 and 6:30 in the morning. So it was a little early. It was an early wake time. It was earlier than work for their family. So this simple intervention that they gave for Matt, and this is kind of logical, was they pushed back Matt’s bedtime one hour to 8:00 PM. So this little manipulations like that are the things that we see and those are important kinds of things. They’re definitely helpful.

Manjit Sidhu: Yeah. And that was the same thing with Walter in the gene study. It says here that it was about an hour before he would fall asleep and from the onset of bedtime. And so they just decrease that by Walters bedtime was worried about an hour and gradually moving it back by 30 minutes.

John Lubbers: Got it.

Manjit Sidhu: Yeah.

John Lubbers: Changing the bedtime was wild. Do you remember, do you recall Umangi Weather Walters, one of Walter’s problems was getting up too early or not falling asleep right away.

Manjit Sidhu: It was not falling asleep right away.

John Lubbers: Got it. So that manipulation, just like you were saying Rei, was to just delay sleep time. And I guess that’s logical too, guys. If we, like those of us who like complain about, Oh, I go to bed, but it takes me an hour or two to go to sleep. One of the recommendations probably by a sleep specialist talking to us would say, well, you know what, why don’t you delay going to bed by an hour instead of going to bed at 10, go to bed at 11, you know, or, or whatever that time may be and it’s logical, these kinds of things translate down into our children with autism spectrum disorders. So super interesting stuff.

Sevan Celikian: I think in the Maclay study they also utilize social stories and other very common tool used in an applied behavior analysis and to the parents and caregivers out there, social stories are our mini stories with texts, photos and pictures and their way to model desired behavior. And we also use some oral narratives to kind of hide the child through it and they’re all individualized though and include photographs though, include text and it will show the steps of the bedtime routine, expectations around sleep sleeping independently. Rewards are reinforcers that can be earned for following through with the sleep goals. So these were read before bedtime and general rule of thumb Grey 2010 recommend social stories should include affirmative language, descriptive language, direct statements, and just general use of positive language. So focus more on the dues, not as much on the phones.

John Lubbers: Got it. And just a reminder for our listening audience, the Maclay study looked at the kids who were two to five years old. So probably why we use social studies now again based on chronological and developmental age of the individual social stories may be absolutely appropriate but certainly very common in two to five year olds,

Manjit Sidhu: Right. And making sure that the social story is designed to engage in the child’s interest. You know, if your kid’s really into Superman than maybe your social story can focus around the character of Superman and sleep time so they’re engaged more.

John Lubbers: Yeah. So Superman goes to bed at 10:00 PM and wakes up, it is 7:00 AM kind of thing and freshed and all that sort of stuff.

Manjit Sidhu: Right. Going through Superman’s nightly routine, you know, that sort of thing.

John Lubbers: Yeah, that’s great. And of course that would be your treatment. ABA professional can help you generate those types of things as well.

Sevan Celikian: Another thing to consider as a pre-bedtime cleanup routine. I think this was used in the gene study and this actually accomplishes two things. It’s a self-help skill, keeps the room clean. That’s a valuable skill for all of our kids to have and this was the main point of utilizing this approach, was to make items inaccessible during sleep time to prevent distraction. Researchers were really trying to keep the sleep environment consistent. So if the child’s were to wake up in the middle of the night, the same conditions in which your feet, he or she fell asleep would be present.

John Lubbers: So what are you talking about there Sevan? Was it like a let’s get the electronics out of the bedroom or?

Sevan Celikian: I think they were using like a box or a bag, like a designated kind of an area. So that does a few things, right? It signals that, okay, it’s time to sleep. It’s SD or discriminative stimulus, a signal to indicate to the child, it’s time for me to get ready to sleep right now the other thing that it accomplished is it made those items inaccessible in the event that the child wakes up during the night. Okay. You know, the iPad isn’t right next to them know or their tablet isn’t right next to them. So it kind of made it inaccessible so that the sleep environment stayed consistent from the time that good night was bid all the way until waking time. So I thought that was a pretty simple but effective a modification that they included in the overall package there.

Rei Reyes: I think for that, just really addressing the environment itself in general will also help address these sleep difficulties. For example, I think for one of those children, the child who was listening to music prior to bidding good night. So what it did was they stopped the music altogether.

Sevan Celikian: I think they replaced it maybe through white noise or another ambience noise.

Rei Reyes: White noise or nothing just to make, again, along the lines of being consistent.

Sevan Celikian: Trying to replace sleep dependencies with more appropriate dependencies they use.

Rei Reyes: They didn’t address those things.

Sevan Celikian: So a lot of cool and different approaches. Some of very easy to apply and there other ones, you know, they require some more parent effort, like the systematic parental fading, the planned ignoring

Rei Reyes: Actually, regarding that it was a tandem the fading of the parental presence and then followed by planned ignoring. Whoever in for one of the children in the Maclay study, the parents did not want to do a fading. They just went to planned ignoring. So those are two different treatments. Fading plus planned ignoring and fading and ignoring only. I think the child was Harry in the Maclay study.

John Lubbers: Oh, right, yes. Yeah. I’m not recalling the specifics of that with respect to that. I’m just looking really quickly to see if there were any other things in terms of some tantrum for television at night and so that was obviously put on extinction and replaced but to your point Manjit, Sevan, Ray structure and routine were generally things that were important for our kids. Given that guys I was trying to think about this for our listener of the nine participants across the two different studies, more or less, all of them saw improvement.

Sevan Celikian: Yes. Across all areas of difficulty. So sleep onset delay, nighttime wakings even though they did occur occasionally they were shorter in duration. In some cases, they stopped occurring altogether. There was some additional benefits like some of the parents decided to taper off some of the supplements and medication. So there were improvements across the board without getting into too much super detail with all of these kiddos.

John Lubbers: Take away from that maybe for our parents is that, have some sense of comfort, parent caregiver out there because these are behaviors, these sleep problem behaviors are behaviors that are amenable or susceptible or changeable with intervention assessment and intervention. So Sevan and Rei was mentioning earlier and Manjit. You don’t necessarily need to go straight to medication as the treatment. These sleep problems are treatable when you approach them from a good assessment and a good sound, empirically based evidence based research based treatment approach. So there is room for hope guys. You can hang onto some hope.

Sevan Celikian: Yeah, absolutely.

Rei Reyes: I think for one of these studies, it got quite hard for two families to implement the intervention, so they dropped out. So I guess what can we give you folks, parents out there is it gets harder.

John Lubbers: No, sorry, say that again Rei.

Rei Reyes: For the Maclay studies, there were two families that dropped out of the study when it got to the planned ignoring.

John Lubbers: Got it. Did they elaborate on why or speculate on why?

Rei Reyes: Not really other than they did say that those two families who are having a hard time around that phase of this study but it’s understandable. I mean, these behavior interventions are never easy. You know, we always tell families it gets far worse before it gets better.

John Lubbers: Well, and we see something similar to that as well. So again, we’re talking Maclay was the two to five year olds. These are infants to toddlers and a planned ignoring again is when the child comes for attention, the parent has to ignore that. That can be difficult for a parent to do.

Manjit Sidhu: Yeah. It’s easier said than done.

Rei Reyes: It is. So we’re not saying this is easy. No parents, it’s not easy.

John Lubbers: Yeah. We know that just from having our parents work with behavior intervention and things of that nature. Things that are not necessarily sleep related types of extinction planned ignoring interventions are difficult sometimes. So a great point, parent and caregiver, these are not easy. What I was saying earlier about these are things that are changeable. These sleep problems are changeable. Sometimes the steps are not easy though. So prepare yourself for that as well.

Manjit Sidhu: And it involves receiving parent training as well. I know in the gene study, the parents received two hours of training and it was involved modeling role plays a lot of feedback, a lot of instructions. So they kind of got to practice what they were going to implement. Parent trainings are important, really important to get that going for you.
John Lubbers: Super. It really is given the fact that we’re asking parents to do these things, that we all have graduate degrees and parents don’t have usually graduate degrees in applied behavior analysis. So it’s important for us to kind of assist them with the knowledge there and the techniques and the approaches and all that. And to be honest with you, as behavior analysts, we have to be cheerleaders a little bit. You know, we have to pat our parents on the back and say, you’re doing great. This is what you need to, this is to be expected, you know, keep going at it. Because sometimes parents will get into and there’ll be like, Oh my gosh, I didn’t expect this and this is so hard. What do I do? So we have to definitely be there for them as professionals. Guys, transitioning towards sort of wrapping this up for our parents, were there any of our kids that you recall across the study, Rei you brought to where the family’s dropped out. Were there any, they did not respond well to the treatments?

Rei Reyes: From what I’ve gathered, and please guys, correct me if I’m wrong, the kids from the gene study, those kids that did not have co-sleeping as a difficulty from what I gathered, they had good improvements across the board.

John Lubbers: Okay. So those are the kids that don’t fall asleep right away, that wake up in the night.

Rei Reyes: They wake up in the middle of the night, they wake up too early. Yes. As long as there was no co-sleeping involved, they saw gains across the board. Now for the families with kids that had co-sleeping as a problem co-sleeping was immediately addressed and there were positive effects immediately. So they were able to fix that. The difficulty was with the other behaviors like night wakings curtain calls early wakings. They did not see across the board across all the children, they didn’t see gains. So kind of like a mixed bag.

John Lubbers: Yes. Yeah. And did they discuss a little bit what their thoughts were why that was?

Rei Reyes: They mentioned that it’s possible that those behaviors were not happening night wakings, early awakenings increased curtain calls. They were not happening before as much or not happening at all because the parents were with the kids, they were co-sleeping. So I guess in ABA terms we’re seeing extinction induced Typographies.

John Lubbers: Got it. Okay. Got it.

Rei Reyes: So that was what the researchers were thinking of like why more of these behaviors happened once we started intervention after co-sleeping was addressed.

John Lubbers: Got it. Okay. All right. So that was kind of one of the difficulties that our [inaudible]

Rei Reyes: Yeah, I mean it is something that we can expect. We did change, the sleeping habits of the child. So I guess, what parents can get from this is just work with your provider, your ABA provider and make sure that those are addressed right after co-sleeping is addressed.

John Lubbers: Got it. Absolutely.

Rei Reyes: In a way, like let’s address co-sleeping first, do the Maclay study first. Once co-sleeping is addressed then jump into gene article intervention that were recommended. It’s how you can look at it.

Sevan Celikian: So guys, what are our takeaways for our parents listening and caregivers listening to this? What our takeaways with respect to this? I know I have a few thoughts. I mean the first thing would be is, my number one takeaway is, sleep problems exist. They’re pretty common in kids with autism spectrum disorder. Individuals with autism spectrum disorder, they show up in a variety of different ways. Co-Sleeping like we were just talking about prolonged sleep onset delay when the kids, you put them in bed and it takes them hours or long time to go to sleep frequent or prolonged night wakings meaning they get up more than once or twice in the middle of the night and, or they stay up for a long period of time. So therefore it interrupts everybody else’s sleep or even getting up early in the morning early being a relative definition, meaning that it’s relative to your family practice.

John Lubbers: If your family is an eight, 7:00 AM wake up time and your individual in your life is waking up at 6:30, maybe not a huge deal, but if your family is, it’s weekend, we sleep to 10 o’clock because everybody’s tired from the week and in you have a child that’s waking up at five, then that could be a little problematic. So that would, that was it. So sleep, sleep problems exist. These are the, what they come as they’re amenable to intervention and you don’t have to immediately go to medication as your first intervention. You could, you do have another option as a behavioral behavior analytic approach. I think the other thing I would say is that the various intervention types, you know, there’s some things that, that we talked about, you know, the, the the clock, the, you know, the delaying this going to bed time. And there’s a few positive reinforcement. A few other things there. I think last but not least is these things are amenable to these treatments. What do you guys did? Am I missing anything there? What other things should we bring to light?

Sevan Celikian: Thanks John. I think you basically covered everything that we need to cover. I would just add to the parents out there to the caregivers. These are all specific problem behaviors and we need to be able to identify them for sleep intervention to be effective. So consider with the help of your behavior analyst or even on your own, determine what’s reinforcing these sleep interfering behaviors. Is it access to your attention? Is it automatic reinforcement? Does it feel good for them to do even when they’re on their own? And keep that in mind when you’re developing a game plan, specific strategies should be used and you know, these can be applied to specific types of sleep problems. And that’s where the functional assessment comes into play. You know, the sleep assessment treatment tool that was developed by Hanley these can be brought to the attention of your provider. And consider the sleep diary as well. You know, it’s a really simple and effective way to record some information on just the basics, before you jump into any sort of intervention, number of naps, actual sleep time when good diet is being bid, what your goals are, and that will help you kind of navigate through the interventions for sleep problems.

John Lubbers: Got it. There were some other things I alluded to earlier that we see in what’s being discussed now for intervention for neuro-typical non-SD individuals in particular adults. They’re talking a lot now about drilling down more on sleep routines. I think we can talk about this maybe in the next podcast when we do a follow up podcast in the future on sleep and additional research on sleep. So I’ll leave that for then, but I’m talking about things like, sound sleep facilitators like a white noise, pink noise, cutting out the light in electronic exposure that kind of people hypothesize messes with our circadian rhythms. So we can go a little deeper into that in the next podcast but a lot of good things there to take away. Rei, Manjit, you guys have any final thoughts?

Manjit Sidhu: I just wanted to mention, I’m just kind of going back quickly here. There was a participant in the gene study that was both on Melatonin and Benadryl and by the end of this research study, he was off belts. So there’s hope out there.

Rei Reyes: Lastly, like we said earlier, these behavioral ABA based interventions, I wish we can say they will be easy. More often than not, there’s hurdles. Here you go and you just got to go over when you’re implementing these behavioral plans research will show, have shown that as hard as they are now, there is light at the end of that tunnel. You know that it stay at it with support from your ABA professional. You’ll see a thread.

John Lubbers: Okay, fantastic guys. Well, so we want to thank the listener for listening to the podcast. Again, thank you very much ladies and gentlemen. If you have any thoughts or concerns, we will have these notes and everything on the website. If you have suggestions or comments, suggestions for future podcasts, feel free to visit our website and that address will come up in a couple seconds to suggest topics. Otherwise, we look forward to seeing you again next time. Thank you very much.

Sevan Celikian: Thank you all.

Rei Reyes: Thank you all.

Manjit Sidhu: Thank you.

Outro: For more insight from the Leafwing Center, please visit the Leafwing Center website and blog page at leafwingcenter.org. Email us at [email protected] or visit us at your favorite social media outlet. Feel free to submit questions or comments about this or future podcasts and we will put links to information discussed in today’s show on the website. We look forward to next time. Thank you.