University Place  Maria Stanley Medication and Behavior Issues with Disabilities  November 2, 2013 UP941   cc [APPLAUSE]  >> Good morning, everybody. It's nice to be here with you today. I'm going to be talking about something that can sometimes be a difficult topic, which is when we think about behavior issues and developmental disabilities in autism spectrum disorders, what is the role for medication, and I think many families and physicians struggle with this. When we think about using psychotropic medications, or medications that affect the brain, we think about a couple of things. One is that people with developmental disabilities and autism spectrum disorders can have a wide range of behavioral challenges, and when these behavior issues come up, families often struggle with how to manage them and sometimes will think about whether medication could be helpful. Some of the challenges that we face are that there really is limited information and scientific data regarding medications and effectiveness, especially in developmental disabilities, autism, and genetic syndromes. Studies tend to be done primarily in typically developing populations and when at all possible in adults as opposed to children, and so the information that we have available about these smaller sub-populations is really limited. Another challenge that comes up is that not all challenging behaviors can be treated with medication. Another problem is that medications can have a higher rate of side effects and less predictable response rates than in the neurotypical population. So this makes it more challenging to use medications. 

Finally, there are limited communication skills for many people who have developmental disabilities that can lead to problems identifying the causes of behaviors, challenges identifying contributory medical issues that might be contributing to the reasons for the behavior problems, and then, finally, delays in identifying medication side effects because people can't tell us if they're having a problem with the medication. There's some additional challenges for families and caregivers. Families worry a lot about medication side effects and how medications might affect their child. There's a concern that medication might not help. And, finally, there's a lot of information and misinformation regarding risks and benefits of medication use in the media, and it can be really hard to know what to trust. Sometimes a medication is touted as being almost magical in terms of the benefits that it can produce. Other times medications are vilified to the point where families feel really frightened of even considering use of medication. The answer is obviously somewhere in the middle, but sometimes it's hard to find what is really correct information.  Another thing that we can think about when we're thinking about medication use is how widespread is medication use in children who have developmental disabilities and autism spectrum disorders. It's hard to find good estimates for the broader range of kids with developmental disabilities. 

There was a recent study done in New York state that looked at rates in adults with developmental disabilities and found that 58% of those adults were on one or more psychiatric or psychotropic medication. In children specifically with autism spectrum disorders there have been a number of studies, and overall rates of medication use in the past decade are somewhere in the range of 27% to 57%. There was a nice study done recently by the database through the Autism Treatment Network, and they found that rates of medication use rise with increasing age, with 66% of adolescents using one or more psychotropic medication. So, obviously, medication use is really high, and it illustrates the need, to me it illustrates the need to be thoughtful about medication use because this really is a fairly large number. There are a range of target symptoms or psychiatric issues  that can respond to medication. Sleep problems is a huge one and probably one of the biggest. Aggression, irritability, and self-harm can be another huge reason for concern. ADHD, or attention deficit hyperactivity disorder, with associated symptoms of inattention, hyperactivity, and impulsivity can be another big target for treatment. And finally, there are a range of psychiatric co-morbidities or co-existing conditions that can occur in people with developmental disabilities just as they can in the typically developing population, but in some subgroups of people with intellectual disabilities, these do occur at higher rates, and those include anxiety, depression, and a range of other psychiatric disorders. I'm going to focus our attention today just on those first three categories because the other psychiatric conditions the range is fairly broad, and it would be hard to capture all those things in the amount of time that we have available. 

So, sleep problems. Sleep problems are a huge issue in kids whether or not they have developmental problems. 26% to 32% of the typically developing population has sleep problems at some point. So this is a huge challenge for families regardless of whether their kids have a disability, but the rates can be much higher in kids who have disabilities. And rates have been estimated at between 25% and 86%. And we know that there is increased risk in certain populations. Some of the examples of this are autism spectrum disorders where we know that there is a significantly higher rate of sleep problems. And there have been studies that have demonstrated that the sleep problem rates may be even higher in the kids who have a history of developmental regression. Often the sleep problems and the developmental regression go hand in hand when we see these families, and it can be really devastating and challenging for families to deal with this. Genetic syndromes, many of them have specific associated sleep difficulties, and some examples include Williams syndrome, Down syndrome, Smith-Magenis syndrome, and Rett syndrome. 

And, finally, visual impairment where there is specifically circadian rhythm disturbance. Typically, we all use light to help regulate our sleep/wake cycles, and for kids who have visual impairment, they don't have that light cue to help regulate the hormones that regulate sleep.  Sleep problems, as you all can probably guess without even being told, have a huge impact on caregivers. When studies have looked at children with sleep disorders in developmental disabilities, they find higher rates of maternal stress, higher levels of parental sleep disruption. Specific studies in kids with autism spectrum disorders, parents report more frequent daily stress and more intense hassles. And when you're already dealing with some challenges or extra things that you need to deal with for a child who has developmental disabilities, when everybody, the child, the parents, are sleep deprived it only makes things harder. When we think about sleep problems, one of the things we want to think about is why. Why are kids having sleep problems? And it turns out that there's a broad range of contributory factors or other issues that may be causing the sleep problems that we need to think about. So it's not just a sleep problem, but we have to dig a little deeper and think about why. One of the biggest reasons is behavioral, and this is true, again, whether you're a typically developing or you're a child with a disability, there are behavioral factors that impact sleep. 

And I think anybody who's a parent probably knows that. There are things that we call sleep onset associations, and that's basically I've learned that I fall asleep being rocked to sleep by my mommy and now I don't know how to fall asleep by myself because that's the only way I know how to fall asleep and so when I wake up in the middle of the night I need to be rocked to sleep by my mommy again.  There is something that we call the trained nighttime feeder, which is basically you get used to getting nutrition during the night. You wake up for food during the night, typically a bottle, and your stomach is hungry during the night so your body has to be retrained not to need food during the night and to get your food during the day. There can be limit setting issues, and sometimes parents inadvertently without realizing it are reinforcing these behaviors. So when you get up out of bed, if your parent comes back and holds you and rocks you and tucks you back in and gives you a kiss goodnight, there's not a lot of good reason not to get back out of bed again. [LAUGHTER] Those things are kind of nice. Those kinds of things are sometimes easy fixes when we find that children are having sleep problems. Other things that can contribute to sleep problems include anxiety which can present as bedtime resistance. The kid who is really anxious or fearful may have a harder time going to bed at night. 

Depression interferes with the sleep of everyone, and psychosocial stressors, and that can be big stressors like some real problems in the home or at school, but it can also be things like there's been a big new change in the child's life, there's a new baby in the home, the family has just moved, and children can get a little unsettled by things like that. Sensory and environmental issues can contribute, and we know that kids on the autism spectrum may be particularly sensitive to sounds and lighting and have specific needs around those things, particularly around going to sleep at night. Also in that category is television. And it turns out that television in the bedroom is the most powerful predictor of sleep disturbances in school aged children. One of the things that we always do is encourage families to get the TV out of the bedroom because it is likely to be a problem if it stays there. Inadvertent caffeine intake. Sometimes we don't even realize how much caffeine a child might be taking in. There's so many energy drinks and different things that have caffeine added to them, so that's one of the things we need to consider is this child getting caffeine in some form, drinking his parents' Cokes or whatever, that's going to make it harder for him to fall asleep at night. And then we need to think about medical conditions. And in this category would be things like obstructive sleep apnea, and this turns out to be much more prevalent in the patients that we see because of differences in muscle tone and, for some of the kids with genetic syndromes, differences in facial and airway structure that can cause them to have a higher rate of obstructive sleep apnea, which can disturb sleep during the night. 

GI problems or tummy problems. Things like constipation. Kids may be waking up at night because of pain or cramping or having a hard time going to sleep because their tummies hurt. Pain for other reasons or itching, kids who have eczema or itchy skin, that may be another thing that's bothering them or making it hard to sleep. Asthma with nighttime coughing may wake children during the night. Nighttime seizures, it's not a huge cause of sleep disturbance, but sometimes in a case where we're having a hard time figuring out what's going on, that is actually something that we end up needing to investigate because that can be a reason that hasn't previously been detected for having problems with sleeping during the night. Medications, and of course kids with developmental disabilities are likely to be on medications for a range of reasons, but there are multiple different medications that can disturb sleep. And, finally, nutrition, and particularly iron deficiency anemia has been associated with sleep problems. So when do we think about medication? And, as you can probably guess from the things that I've said so far, medication is almost never the first consideration. We really want to think through these other things first and think about what else might be going on. 

So, first of all, if there is a known or suspected underlying medical or behavioral cause, we want to address this first. I'm showing this because this is actually a really nice resource for families, the Autism Treatment Network, and they have a website called www.AutismSpeaks.org, has put together a number of really nice tool kits for families. And they were developed for families of kids with autism spectrum disorders, but it turns out that they're useful, many of their tool kits are useful for families who have kids with other developmental or intellectual disabilities. This is a really nice one and just talks through what are some strategies that families can use behaviorally to help their children have better sleep. So, when do we consider medication? When there's been inadequate response to appropriate behavioral intervention. When suspected medial issues have been addressed and treated. When there's significant impairment in daytime function that's related to inadequate sleep. When there's safety concerns related to child's nighttime awakening because we sometimes see little ones getting up during the night and getting into serious trouble around the house if they're not being supervised. And then, finally, any of those in conjunction with severe caregiver stress because, again, being sleep deprived, especially for an extended period of time, is enormously stressful. When we do use medication, I'm not going to spend a lot of time on specific medications, but I will say that when we do use medication, overall, the goal is to not use the medication long-term. 

And one of the lovely things is that many times when we do use medication, after three to six months we can start to think about weaning the medication. And for some kids, it just resets things. Having gotten in a habit of going to bed by themselves, in their own room, sleeping through the night, once we've got that habit in place, sometimes we can slowly back off on the medication and keep the good sleep habits, and that would really be the goal.  I'm going to move on now to the next category, which is irritability and aggression. When we look at rates of aggression in developmental disabilities, it is higher in folks who have developmental disabilities than the typical population. Some recent studies found rates between 7% and 11%. And, interestingly, both of the studies that I've cited here found an increased incidence in individuals who have milder disability.  In autism spectrum disorders, the rate may be much higher. Now, this is not exactly comparing apples to apples. These studies were not done identically, but they did do a large study looking at kids with autism spectrum disorder and what the prevalence of aggression was, and as many as 68% have exhibited aggression against a caregiver and 49% had exhibited aggression against a non-caregiver. 

And there was a small sub-population in one of the earlier studies in kids with developmental disabilities that I mentioned, and they had a sub-population of kids with autism spectrum disorders, and in that study they also found higher rates in the kids who have autism spectrum disorders. In this particular study, which is a large study, they found a higher risk in kids who were younger, kids who had higher severity of social and communication problems, and kids who had increased repetitive behaviors. Again, as you can imagine, this has a huge impact on both the child and the family. It affects the quality of life for the child. It increases the risk for the child to be abused. And it's a strong predictor of out of home placement, which is something I think everyone would like to avoid. For caregivers, behavioral problems are more associated with parent and teacher stress than any other child or caregiver characteristic. That's huge. But, again, aggression isn't one thing. And so we always have to think about why. 

Is this child having pain or other medical issues? Is this child having sleep problems? And that's really the root of the behavior issues. If the kid is only sleeping three to five hours a night, it's going to be hard. And that child isn't, none of us manage our behavior well when we're not getting enough sleep. Medication side effects, again, sometimes medications that children are placed on, for example seizure medications, can inadvertently cause a side effect of increased behavior difficulties. Anxiety, depression, and other mental health issues can sometimes be at the root of behavior problems. Frustration related to communication skills, and I think particularly in the younger aged kids or kids who have more communication impairment, this is huge. Imagine not being able to communicate your wants and needs in an effective way. It's so hard, and those kids behave, they act out with behavior. They're so frustrated. And so in those circumstances, one of the things that we need to think about for treating the aggressive behavior is getting more support for communication skills. 

Abuse, bullying, and other stressors can sometimes also provoke aggressive behavior. And behaviors can sometimes serve a function for a child. So we always say all behavior is a form of communication. Kids are saying something when they're showing us their behaviors. But that also points out the fact that often the answer is something other than medication and that we really need to consider behavioral intervention. Some of the different functions that we see for behavior include escaping from a non-preferred activity or situation. If I start hitting in the classroom, I might be sent out in the hall, and I won't have to do that thing that was really hard for me. To get access to a desired item or activity. To get attention and usually we think of getting attention as being positive, but sometimes kids will even do attention getting things for negative attention. Sensory seeking or avoidance. 

Response to pain or physical discomfort, and I think, again, for people who have limited communication skills, sometimes these things are hard to sort out. It really takes some time to figure out because they can't say I'm having pain and that's why I'm irritable and hitting. And then, finally, trying to gain control of a situation that feels out of their control. Again, there is a lovely support available for families on challenging behaviors. This does not take the place of behavior therapy but helps parents understand and think about challenging behaviors. And this is, again, through the Autism Speaks and the Autism Treatment Network, and it's called the challenging behaviors toolkit. And it's very long but really nicely done and divided by sections according to different categories of behaviors or types of challenges a family may have.  So, with aggressive behavior, when do we consider medication? Again, we want to make sure no medical conditions are contributing or causing the behaviors that we're seeing. We want to make sure or we want to see that the child is having persistent significant impairment in function despite adequate behavior and communication supports. If there is a significant risk of injury to the child or others related to the severity of aggression, that really pushes us toward thinking about medication. 

And then, finally, caregivers and the child, if he or she is able to participate in decision-making, have to be open to this option. Moving on to inattention and hyperactivity and impulsivity or ADHD. We know that the rates, again, are higher in folks who have either intellectual disabilities or autism spectrum disorders. There was a nice study that looked at younger children, just young, school aged children, in 2001 and looked at kids with intellectual disabilities versus typically developing kids. They found rates of ADHD of 3.5% to 7.7% in the typically developing population, but 19.2% to 28.6% in kids who had intellectual disability. Again, the rates seem to be higher in folks who are on the autism spectrum with rates reported between 41% and 78% in that group. So, what is the impact of these symptoms? These kids, it's hard to find impact information in the broader range of kids who have intellectual disabilities, but in the kids who have autism spectrum disorders, what we find are greater delays in multiple areas of adaptive functioning and a poorer health related quality of life. So, once again, we're going to do what we did with the other symptoms and think about what is the differential diagnosis. Sleep is, again, high on the list. Is this child getting inadequate sleep? We know that kids who are not getting an adequate sleep often look very similar to kids who have ADHD. 

They don't focus well, and, unlike adults who get more sluggish and sleepy when they're overtired, kids can be more hyperactive. And so we don't always jump to that conclusion, but with some thinking about it, we can sometimes figure that out. And included in that category would be kids who have OSA, or obstructive sleep apnea. Anxiety or depression, again, can cause kids not to focus the same way or to do things that look more impulsive. Sometimes, too, what we have to think about is, is this child's activity level and attention span appropriate for their current developmental functioning? So maybe they don't have the attention span of a 10-year-old, but maybe they're functioning more like a five-year-old, and that's about the attention span we would expect at that age. So we don't want to overdiagnose, and we really want to think about developmentally where is the child when we're thinking about this. There can be some environmental exposures, and lead is a particular one that can contribute to these types of symptoms. And then thyroid disease is another medical issue that can contribute. In kids who have new onset of symptoms, we have to think about a special group of things, including head trauma, abuse, is this child having a neurodegenerative disorder, mood or anxiety disorder, substance abuse, or is there a major psychological stress in the family or at school such as bullying. And, again, these symptoms typically don't happen out of the blue. 

A lot of times kids who have these issues, they present very early. We see early on difficulties with attention and hyperactivity. And so we wouldn't expect to see new onset in the teenage years, for example. There has been some guidance developed for clinicians when we think about evaluating and treating ADHD symptoms. And there was a clinical practice pathway that was developed, again, specifically for autism spectrum disorders, but it actually makes good sense for lots of kids, including other kids with developmental disabilities. And a lot of it is it says do the same thing that you would do for any other child when you're evaluating these symptoms. Meaning use standardized behavior checklists to evaluate the symptoms, both at home and at school, look for medical sleep or co-morbid psychiatric conditions that might be contributing, and then finally, if there's a discrepancy in symptoms across settings, that always raises some red flags or more reason to investigate. So if we're seeing the symptoms at school but not at home or at home but not at school, we need to understand a little bit more about that. And if there are inadequate education or behavior supports, we need to make sure those are optimized. And then once we've looked through all of those things, if we're still seeing symptoms, that's when we consider medications. 

A special consideration are kids in the preschool age group. There is very little information about medication use in this age group, and what we see clinically is a higher rate of side effects. And so we want to be particularly careful. We need to be sure we're doing the right thing whenever we think about medication use. There isn't a lot of guidance around this, but there are some guidelines that were put out by the American Academy of Child and Adolescent Psychiatry. And, basically, for almost any psychiatric condition in the preschool age group, they recommend behavioral, developmental, and psychoeducational intervention. We really want to do anything non-medication first for these kids. And then they say for kids who have particularly autism spectrum disorders with severe aggression and irritability, if that is the case, it is reasonable to consider a brief trial of medication, and then, if that's successful, to use that medication, and presumably in conjunction with good behavior supports, for not an extended period of time, nine months, and then go back and look at should we be discontinuing the mediation. We don't want to just consign kids to being on medication for the rest of their life when they're started on medication this young. The AAP, which is the American Academy of Pediatrics, has put forth some guidelines about ADHD symptoms in particular, and they don't specifically address the kids who have developmental or intellectual disabilities or autism spectrum disorders, but they do talk about the preschool age group just in general. 

And, again, what they say is after eight to 12 weeks of appropriate behavior intervention, if there continue to be moderate to severe symptoms, at that time it would be reasonable to consider medication use. So, finally, there are some tools available. I've been mentioning tools as we went along, but there are some tools available for families and caregivers to think about decision-making for medications. And, again, the Autism Speaks and the Autism Treatment Network have put out a very nice toolkit for this, and it really is a good guide to help families feel like they're making a good decision when they're thinking about medication, whether either choosing to use medication or choosing not to use medication. There are also some tools that physicians or others who are prescribing medication have available to them. Medical knowledge and use of the differential diagnosis as we went through. Current medical evidence, so we need to always stay abreast of what's going on in the medical literature. And, finally, clinical practice pathways that can help guide good decision-making. And then I was going to talk just very briefly about our responsibilities as physicians when we're thinking about using medications in people who have developmental disabilities or autism spectrum disorders. We need to consider the differential diagnosis. 

What's causing the thing that we're seeing, the symptom that we're seeing. We need to look for contributory medical problems. We need to think about alternatives to medication. What could we use beside medication that might also be effective? We need to think about our responsibility when we care for patients who have limited ability to communicate. We need to use caution and always consider and implement behavior supports before thinking about medications in the preschool age group. We need to use those clinical practice pathways and current evidence to support our decision-making. We need to review side effects in detail with caregivers and patients. And we need to monitor medications appropriately.  Any questions? [APPLAUSE]