Acknowledging the challenges of diagnosing autism, pediatric neurologist Jennifer Martelle Tu, MD, PhD, provides clarity on the criteria, then discusses common issues – including digestive, sleep and aggression problems – and which treatments help. Plus: new information on ADHD symptoms in kids with autism.
wanted Thio go over some of the troublesome behaviors and autism because I know that you guys have Pediatrician's really are the front line and caring for these patients. And I hear it time and again, both from other physicians and from the parents, um, that there's just really ah lack of, I think good resource is or that perception that there's not a resource is and they don't know what to do and who to go and who should evaluate this and what to treat with. And there's just a lot of misunderstanding, a lot of confusion and not a very streamlined process for taking care of these patients. And so my goal tonight is to sort of do a little bit of a literature review, going over some of the more problematic and more common behaviors that at least I see in my clinic on some of the things that I'm usedto caring for in treating in this patient population and hopefully give you guys some. You know, some tools for your toolbox to try and temporize while we're waiting for the right referrals were waiting for the evaluations that need to happen. So first and foremost, I have no disclosures to report. This is a pretty straightforward lecture. Our objectives for today. The main thing we're gonna focus on is trying Thio, understand and describe the common behavioral issues we see. We're gonna look at some of the barriers. This is pretty straightforward. I won't spend too much time and then, but I'll point them out as they come up. But there is some pretty important barriers to remember for these families when we're trying to use both non pharmacologic and pharmacologic interventions that I think are worth noting and might help you, um, sort of team up with your family is a little easier and recognizing those barriers and come up with strategies to circumvent them next will try and go through some of the medications that we use. I don't expect any pediatrician to become really familiar or comfortable and using these medications, but many of them are ones that you've used before for other reasons and are things that you can certainly try as first line therapy while patients are waiting for psychiatry and neurology and then lastly, just a quick note on trying to differentiate between developmentally normal behaviors and then the problematic behaviors that actually warrant treatment or further evaluation to go through all of this. These objectives, I really thought it would be best to start with what really is autism. The definition has changed slightly over the last couple of years on but the new D S M criteria. Things are a little, I think, clearer, but still it's still ah difficult or challenging diagnosis to obtain. And then we'll look at the behavioral issues will look at the the pathology versus developmentally appropriate behaviors. And then lastly, we'll touch on the pharmacology. So first, what is autism? I'm going to go through this just exactly exactly how the D. S M describes it, because it's important that we look at the verb ege to really understand how this diagnosis is made. So the first criteria really is these persistent deficits and social communication and social interaction. It has to come across multiple contexts, so school and home or day care and home, and it can't be accounted for by general developmental delays. Um, that's a really important thing, because when somebody has global delays, it makes it very challenging toe Isolate the social communication and social interaction when their other domains for development are really not to the level where I would expect certain social behaviors eso those those Children that have global delays and eventually end up with an autism diagnosis. Their diagnosis is often quite delayed because we're waiting for the general domains to sort of establish themselves of where they're going to fall out, You know, for motor skills and language skills, they have to have all three of the core criteria here. So deficits and social emotional reciprocity, I mean just very basically, do they smile at you? Do they make eye contact? Do they want to share an experience with you? They have to have deficits and non verbal communication. Um, do they pointed objects? Do they wave by? Do they pick up on some of those subtle cues Facial expressions, things like that? So let them know when they're in trouble or when you're angry with them or when you're happy with them and then, lastly, deficits in developing and maintaining relationships. This is one of the more challenging pieces and part of the reason why autism is often delayed in patients because of this final criteria in here of the relationships because Children aren't expected to make a lot of relationships until the 83 or four, when we're really seeing not just tandem play, but actual social interaction. You know, the kindergartner, the preschool are really developing those relationships, so they have to have all three of these criteria in order. Thio satisfy this portion of the diagnosis. The next criteria is restricted or repetitive patterns of behavior. Um, this could be in certain interests or in activities, and here they only have to have two of them on. And so this one is a bit easier for most. Most patients that come to us with a concern for autism satisfied this criteria. Um, the stereotype of repetitive speech is the more common one that we see. Another one that's quite common is the adherence to routines. Thes patients do very poorly when their routine is disrupted. They need a lot of a lot of headway. When you're planning to have a transition, they need a lot of help there. The next one could be highly restricted interests thes are fixations on, you know, trains or cars or, you know, very specific interest that they're they're just really, really fixated on on bits, often not the whole. It's the parts of things that they're interested in, not necessarily the whole piece of something. So this is a kid that has a car, a toy car and they spin the wheels because they're really interested in the wheels and the movement there and then the last one. This is what comes up on all the $8 and a screening is the sensory sensitivities. So either hyper reactive or hyper reactive. Um, and we also see, um, special interest in sort of sensory aspect. So these are kids that are seeking sensation. These are kids that lick things or put things in their mouth or constantly run their hands along the walls. Or they touch anything because they're really seeking out that that sensory input and in the last two criteria are pretty straightforward. Almost every every, uh, every entity in the D. S. M has thes similar similar Burbage. So they have to be president early childhood. But the key thing here is that you may not become fully aware of them until the social demands exceed the limited capacities. That sentence right there, um really makes it challenging for the older kids because we often see kids come later to us because they were coping for quite some time. But then, when the social intricacies of school become really complex, that's when we see issues at age 889 you know, heading into middle school, it becomes more challenging for these kids to really interact socially at an age appropriate level. And that's frustrating because, you know, by that age they've aged out of the regional center. There's really you know, the resource is for them are quite limited. So, um, I see a lot of patients come to me at that age with this frustration because of the criteria, see? And then lastly, there has to be impairment of everyday functioning. All right, so I I bring up that definition, really. Just thio show you were demonstrate that it is very straightforward. The definition of autism is laid out for you, and what that means is pretty much anyone can make. So you could have any physician look a child and say, Well, yeah, they check that box and that box and they meet the criteria for autism. But what's really challenging are the subtleties. And I mentioned a couple of them. There are a lot of things that mimic autism. Anxiety is a very common one. A D H D is another common one. And if you don't have the ability to really spend a good chunk of time with these patients, it could be very challenging to feel confident in that diagnosis. And that's what a lot of parents tell us. Is that Well, I saw one person I thought it was autism, and I saw someone else and they said it wasn't. And you know, the parents get frustrated because they get a lot of conflict ing information depending on what type of evaluation they had. And I will just say that nothing is perfect. A lot of the scales that we use the measures that we use, um, do leave room for interpretation. And so for patients that I see who have not yet had the full neuropsychiatric, you ation, I will often tell them straightforwardly that well, your child does or does not meet criteria based on the specific things I see in clinic. But I reiterate how important it is. Thio rule out those mimics and so we can move forward, trying to address some of the behaviors and concerns they have, but they're still needs to be that thorough evaluation looking for those mimics, and I'll get to that testing in just a minute. But in general, when we talk about autism, we know that it's about a 1% prevalence worldwide. Um, this has been increasing over the last couple of decades. There's a lot of theories out there about why this trend is occurring, but I don't think anyone could say definitively. We know that it affects males more than females. But within this population, um, how I explain it to most families is that autism really is an umbrella term, and there are multiple underlying ideologies that present with the same phenotype. And so it looks like autism. You can call it autism, but the cause is really what's different and knowing that it also helps families understand that the evaluations are so important and the treatment might vary from child to child, depending on the underlying ideology. Um, we know that there's a lot of gene environment interaction here. Um, there's been good twin studies that have really brought that home where and even in mono psychotic twins. You know there's only a 77% concordance, and that's different between male and female. There's a much lower concordance and female Monnet psychotic twins, Um, but what I alluded to earlier with E the mimics and some of the underlying causes and you know, a D h d anxiety depression when you actually fulfill the criteria and you make the diagnosis of autism. If you look at that population, about 75% of them have co morbid psychiatric illness. And that brings ah, lot to the table as faras the behaviors, the baggage, the treatment. There's so much tied into this diagnosis, and we know that each child is unique there, not a single patient with autism is it's the same as the next. And so you can't just say, Well, we treat it this way and we give this medicine and we do this routine and we make this change and you know that unfortunately just doesn't work. So I'm going to present to you the data as faras what we have the studies that have been done, what treatments we think are helpful. But you have to take most of this with a grain of salt. There's a lot of conflicting evidence out there. There's a lot of anecdotal evidence out there and families, um, they read a lot, so they often come with a lot of questions. I know you guys know this because they come to you first with all these questions, but there's a lot of information out there. Some of it's good. Some of it's not, all right. So before I jump into the pecan behavioral issues, I just wanted to touch briefly on what neurology typically does for these patients. So, um, I will often get a referral for a patient who we think has autism, where they come to us first with developmental delays or some concern about how they're learning. And our first step is to decide what testing should be done and if any imaging should be done and if any referrals should be made. Most often, these patients get referred to the regional center. Um, if the school age, then they get referred to the school for, um, Psycho educational testing. We will often dio first line screening with genetic testing that typically include the C G H a Rey carry a type we'll do fragile X if the right features are present. Aan den There there is an invite a panel, um, depending on their insurance and their willingness to pay, or to to do the testing. That is really for autism and development of delay. It's got over 2000 genes that are tested. I can't say personally that I think the hit rate is that high. But again, depending on the circumstance, the family, that might be a test that we offer them a swell as faras image ing. This is the question that often comes up from families. Um, you know, not every patient needs a brain injury. But if there's clinical or exam features in addition to developmental delay such as microcephaly or microcephaly, or there is, um, some feature some dysmorphic feature or abnormal reflexes things of that nature, then those Children often do get imaging, and the recommendations around imaging certainly have changed within the last 10 years. It used to be that every child with autism it was standard of care to get a brain injury, and that really has been changing because we have so many Children with autism that have gotten brain memorized, and we know that there's just not I'm not a lot of results and and positive information that comes from those memories, so we don't often get it anymore unless there's some other clinical piece that pushes us that direction. So whether or not a child has a diagnosis of autism by the time they make it to neurology, uh, doesn't necessarily change what we might do for them as far as the behaviors. But I know that not every neurologist typically manages behavioral issues that we see with autism. I do within my department. I know it's Stanford. There's a specific clinic that does the mind Institute certainly has neurologist that dio, but it really depends on where you are assed faras what neurology does. Where I was previously in Washington, D. C. I had a separate clinics set aside for my patients with autism that was dedicated just to the behavioral issues. But really, the lack of psychology involvement in most neurology department is what limits our ability to really diagnose and treat patients with autism. Yeah, so that being said, I'm going to dive into the behavioral issues that we see most commonly, um, I think parents have different priorities as far as what they want treated. Um, teachers certainly have different priorities as far as what they want treated. But I think the most common ones are going to be nutrition and G. I dysfunction. Sleep is a major one. Anxiety and depression and sensory processing is is relatively newer as faras treatment and autism because it's it's taken quite a while to be recognized as a co morbidity. Certainly aggression and South injuries behaviors air quite common in this population and then, lastly, ticks in 88 year impulsivity. So for nutrition and G I dysfunction, the most common thing we see really is food selectivity in food, Nia phobia. But of the most recent parents survey, it really comes out. About 90% of patients with autism have some form of food related concern. Sometimes it's that they're having frequent abdominal pain. They have constipation. Some of it is behavioral. Some of it is diet and food related. There are really eloquent emerging models looking at the gut and the brain connection. Um, it's a relatively new discoveries faras the immune system and how that regulation and interaction occurs between the gut and the brain and So I think over the next, you know, 1 to 2 decades we're going to Seymour and more information and more and more data coming out about how treating some of these nutritional and gut issues can improve the quality of life for our patients with autism. We don't really know the main causes for why there's such an issue with constipation, diarrhea, screwed intolerances. We think that there's, um, a difference in mitochondrial dysfunction. We have. They have them. I say. We like the Royal. We, uh, there certainly have been studies demonstrating that that the gut microbiota are different in patients with autism compared thio age matched peers. There's also been differences demonstrated in patients with autism versus patients with fragile X or patients with trisomy 21. So it's not just the restrictive diet that we see in many developmental disorders. There's something unique about patients with autism. Um, that has been demonstrated in some of those mouse models as well as in clinical studies. Looking at the gut microbiota, we know a lot of Children with autism have poor carbohydrate metabolism on and there have been some decent studies actually looking at changes, you know, gluten free diet, things like that that have really brought home that point that we don't know why. But carbohydrate metabolism seems to be different in patients with autism. Yeah, as faras reasons why this is concerning, um, one of the most common things really is just health and growth. I mean, a lot of patients with autism end up with macro nutrient deficiencies. Um, they end up with obesity. And then, unfortunately, with obesity, there's a lot of obesity related medical conditions that compound the medical care necessities for that child. And then, importantly, for the families, there's a lot of effect on behavior. Andi, this again comes to the to those mice models that have recently been developed and looking at how our guts microbiota of flora actually influence our cognition and our neurochemistry. They've demonstrated changes in our dopamine in our serotonin in our Gabba, based on the different flora and the G I tract. So it's quite interesting how thes diets and G I health for patients. Autism has quite a profound effect as faras treatment options. First of foremost, the goal is to improve variety and decrease the selectivity, so occupational therapy and feeding therapy is the number one recommended treatment for patients with autism. The goal is to have them eating fruits and vegetables and protein. Um, there certainly are, um, occupational therapists and just about every academic center that really do help with this. The G I clinics are quite good at helping with this, but there are also private occupational therapists who are good at helping with. It's sort of like you can think of it kind of like allergies. How one of the treatments is exposure therapy kind of the same way that a lot of feeding therapy, occupational therapy works with autism and my clinic. We talk about a lot of food cheats, so trying to meet the patient where they are but still help with nutrition and with constipation and buy food sheets. I mean things like smoothies that have vegetables and protein in them. Or if the patient really likes french fries, finding alternatives like rather than tater tots. There are veggie tots. There are cauliflower, broccoli tots trying to meet the patient where they are with their current limitations, whether it z a certain aversion to textures and colors, things like that, Um, if they don't like cold smoothies. You can actually give them a warm smoothie. It doesn't matter just because it's warm. So ah, lot of different ways to try and cheat the nutrition and try and help families. Um, improve, because I think constipation is a really big one. When kids aren't eating well, not just worsens there withholding behavior, it worsens their daytime behavior and increases their pain. So trying to improve nutrition really can make a huge difference. I briefly touched on the gluten free in case and free diets. There actually is good. Um, there's been two good studies within the last five years. Looking at this, it strongly recommended. It's sort of inconclusive at this point, though, but the reason it's recommended is that there's no obvious evidence of harm. And so when I talked to families about diet and options rather than throwing them on a lot of vitamins and minerals and supplements and whatnot, um, the first one that we typically go to is gluten free in case and free, because it's, um, not that there necessarily easy diets to follow. But there's a lot of data and a lot of, um, cookbooks and things out. They're so it's easier to families to do gluten free because there's a bigger gluten free community now than there was 20 years ago. Eso that's the first one that we try if we're going to do anything as faras supplements, Um, there's very limited data for using any supplement. Um, you know, Co Q 10 comes up Vitamin D, B 12 multivitamin, Um, and part of it is that the studies air very hard thio to conduct, mainly because the only outcome really is a parental report. Um, so the data is limited. But again, if there's no evidence of harm and if families find it helpful in their opinion, then I typically don't discourage trying supplements. Typically, um, we know that in the studies that have done lab evaluations, we see low levels of vitamin D B 12 so they're going to do anything I stick to the ones on the list there is as the primary ones. And then we also see this, um, inverse relationship with their Amina or their, um, their their their fatty acids. So they're in the pro inflammatory state they have. The Omega six is compared to the Omega Threes. And so trying thio invert that, if possible again. Not a lot of data to support it, but no really evidence of harm. And then the last one. That sort of emerging therapy is theme microbiota transfer therapy. There's there are case reports. There's very small studies have been done. And again, the only endpoint in this is parental report. So they're positive data, which is, you know, that's that's hopeful, but the numbers are not nearly high enough to really recommend this. But if parents want to seek it out again, um, it's not something that is necessarily discourage but not much evidence. As faras barriers. The biggest one that I see truly is the time and the education for families. Um, they spend a lot of time looking for that magic bullet that they could just feed their patient, feed their child and help them improve their behavior. And it's just not out there. Eso It's a lot of education, a lot of talking about diet and being willing toe listen to them about what they've tried and what they're interested in trying. Um, occupational therapy is not everywhere, so that's often a limit. And then, in order to do a lot of these diets, it costs money. It's much easier just to go to McDonald's and get a happy meal every day because it doesn't cost a lot of money and it keeps their child happy. Eso it's, um this is not ah, but nine issue. It sounds kind of funny sometimes when you focus on, um, nutrition as a primary treatment strategy for patients autism. But it really can make a big difference. So a lot of talking a lot of education for families. All right, The next one that I see probably the next most common one is sleep. I know you guys see this because I get the referrals for this, but this is a very common one. Upto 50 to 80% of patients with autism have some form of disrupted sleep on, but it tends to inversely correlate with the I Q and functional status. So the worst their autism is, the more likely they are to have sleep disruption. Sleep onset insomnia is the most common form, and then you've got sleep maintenance where these kids just they don't need a lot of asleep. They wake up really early. Um, but the causes here are really this'll is where it's. It's very early in our understanding of this, we've definitely demonstrated differences in neurotransmitter expression and patients of autism. But again, you have to remember that autism is just that umbrella term. There's so many underlying causes that it's hard to look at just the general population for autism and identify thes significant changes. But certainly melatonin, serotonin and GABA, which are all very important for sleep, have been demonstrated in some studies as being different in or lower in patients with autism and then nutritional, different deficiencies, things like autism. Some of the B vitamins, you know, anecdotally have this relationship with sleep, Um, and then a big one here really is anxiety and environmental hypersensitivity. So when you've got a child with autism who has severe separation anxiety and can't sleep because they hear a certain noise, it makes it very challenging for that child to get into sleep. Um, and then lastly, you know more and more of our patients, autism certainly have obesity as a concern. And so there are other medical causes, like sleep apnea and restless like syndrome, you know, with the anemia and poor diet that that's certainly come up. The main reason toe worry about sleep here is mainly because it worsens daytime behavior, but a huge one. Not to forget is the burden on caregivers. This is something we see in neurology for any caregiver patients with dementia, very similar population as far asleep. It really adds to the burden for the caregiver. If they've got to get up and go toe work the next day, they can't be awake all night with their child. Who's having who's struggling to get into sleep, the treatments again, initially our behavioral and addressing any underlying medical issues? Um, one of the most common ones, really, is that anxiety and in the sensory hyper sensitivities eso the non pharmacologic ones. This is where I focus a lot of my attention because there's not great evidence in the pharmacologic side, but for the non pharmacologic, really, routines and sleep hygiene are crucial here, Um, for routines. I always stressed daytime exercise and not just letting a child kind of ramble and run around, but actually having a dedicated 1 to 2 hours where you purposefully and being present with a child, you engage in a physical activity, so going to the park to play soccer or going on a walk around the house, things like that to actually engage the child and physical activity. We really wanna limit daytime naps to try and encourage that consolidated sleep overnight and, um, important oneness screens. Because most Children with autism have their own tablet, their own screen, they're looking at it all the time. And so we really wanna limit that before bedtime. Two of the ones that that and my personal experience have really benefitted patients in our little you wouldn't think about a little off the wall. They're both recommended by most of the autism, um, organizations. What you know, there's multiple multiple of them. Some of them are more legitimate than others, but almost all of the autism organizations that I am aware of also endorsed these to the first one is photo stories. So for Children, especially with limited literacy or language skills, putting together a book with photos, walking them through their nighttime routine, talking to them, showing them exactly what's going to happen. This is similar to what child life does when they're helping. A child coped with some intervention they're gonna have in the hospital, but It's really just focusing on bedtime and what's going to happen, making them very familiar with all the things we're going to see. So the other one that is endorsed is what's called the bedtime past program. This works better for Children that have, um, you know, a decent amount of language. But basically especially for those with anxiety, is you provide them with a pass that they can hand to you for a freebie. So at any time in the night, if they feel like they need you, they can give you that pass and you don't ask any questions. You say Okay, you needed your past. You hand it to me and then we're done, and it's sort of like a setting the rules and routine and being consistent. But that bedtime past certainly seems to help with patients that have that anxiety because it just it lets them know that if they really need you, they can ask for you. Okay? And the last one is bedtime fading. That really just comes from sleep medicine. So not putting a bed a child to bed. If they're not tired finding their time when they are tired and starting there so that they get used to actually going to sleep when they're in bed. So if the bedtime is that they're tired at 11 PM, you put him in bed at 11 p.m. And then over the next several weeks, you work on fading that time earlier and earlier. Um, but you don't want him to put him to bed when they're just gonna lie there and resist going to bed. You wanna wait till they're tired? Yeah, some of the environmental things that could be changed our sound machines for that. That sensory child who's sensitive and weighted blankets. Um, data is quite mixed on these, but overall pretty positive andan. The nice thing to remember for our patients is that with weighted blankets and sound machines, thes air medically indicated you can treat them like DME and you continue to get get them reimbursed. So parents I know weighted blankets are often quite expensive. Um, but that is Ah, it's ah, and a medical equipment device. Basically that they could get reimbursed for. And then the last thing for the parents really is it's reassurance that most of this does improve with age, so it's very challenging and the toddler age, the young child school age, but generally middle school, high school. It doesn't prove as far as the pharmacologic interventions thes air. Pretty straightforward. These are all things that I know you guys have seen before. Melatonin truly is thes starting point and what most people use. Andi, depending on the age typically 3 to 5 mg going above that, generally you're going to run into issues with vivid dreams. Um, in this population, so I I rarely go above 5 mg and then Alfa Agonists or things like clonidine, um can be helpful that that side effect the sedation is a side effect of the medicine. Not really the reason why we're using it. And just like any animal model, you develop tolerance not to a medicine, but you develop tolerance to side effects of medicines. And so, with time, that sedating effect, that's where off. And then, lastly, the atypical anti psychotics. I would not, um, certainly not expect to see any pediatrician prescribing these unless you're you absolutely need thio. Um, not not trying to withhold any any medications from you guys, but generally, not something you guys typically prescribe thes often are not use necessarily for sleep. We use Thies again for that benefit of the side effect. When we're addressing other behaviors, The biggest barriers that I see and trying to treat sleep come from co sleeping and worker caregiver work schedules. Um, you also have to remember in the Bay Area, especially, um, there's limited size for many of the dwellings that families Aaron so shared rooms is a big issue and just trying to take into context. Um, the whole family dynamic, right? So this sleep impairment doesn't just affect the child, it also affect their parents and their siblings. And so trying toe work with them around all those issues could be quite difficult. Sometimes we have, um, you know, parents and end up sleeping in like the living room so they can give their child the bigger bedrooms so that there are other child without autism can also have a private room like there's I see certainly a lot of sacrifices that families make trying Thio trying to make sleep work. All right, the next one um just looking at the time. I think I'm going to pick it up a little bit. Sorry, guy eso anxiety, depression and sensory processing. Um, this is relatively new. The changes in the D S M with the last from 4 to 5, really allowed us to make more co morbid diagnoses. And so similar to a D h d and and threats, we see a lot more. Ah, lot more of this now, um, than we did, you know, 10 20 years ago. So depression is is, um, pretty sorry. Estimated about 10 to 50% depending on the age and which studies you look at and then about 80% with some form of anxiety disorder. Most commonly separation anxiety. Um, o c. D. Although city is challenging because, honestly, the criteria for oh city are also sort of ingrained and embedded in the diagnosis for autism, so that one's a little more challenging. Um, and then social phobias is quite common. A typical sensory processing similar to O. C. D. This is a core feature of autism, so it's only been recent that we've sort of pulled this out and and started yet Maura's pathology rather than just a part of autism. We know that there's different forms of sensory sensitivity, and we know that the higher the sensory issues are, the bigger the impairment is and the lower adaptive functioning the child. So whether or not to treat the sensory processing really gets at the core of the quality of life of the child. And if they have overall decent skills, are relatively high functioning. Can you better further improve that by addressing some of their sensory issues? Um, since it's relatively new, there are still multiple scales are being used in sort of tossed around is how best to evaluate the more common ones or the sensory profile, this short sensory profile. And they've sort of been adapted to the autism population treatment again. Here is the gold standard here is non pharmacologic. The hard part is that that the practice occupational therapy that has been done, it's called century integration intervention, um, similar to feeding therapy and aversion therapy. It's a lot of exposure and, um, sort of like a b A with a discrete trials. Very similar to that, Um, but this is something that's been around for decades. I mean, I think, um, I think it was first I forget her name, but the the occupational therapist, the doctor who first started this, Um, I want to stay in the seventies. It's been around that long. It's just doing not until recently, that doing some of the literature reviews. Um, it's sort of like a Cochrane review it's been now it's deemed evidence based medicine. So when you recommend integration, sensory integration, intervention its's, it certainly got it's got its merit. Um, there are there is good evidence to this, and in doing it, the hard part is finding an occupational therapist who actually is knowledgeable and doing it. Um, but I think most academic centers. Um, if you have an occupational therapist that works with anxiety or sensory sensory processing issues, they typically are familiar with it, or at least the general sense of how to do it and then for pharmacology similar to any child, whether or not they have autism. If there's anxiety, SSR I continue to be the mainstay. Um, there is data. It's a little limited on DMA ixis faras the results, but there certainly is data. Um, and it's it's not. I don't think there's any autism organizations that that recommend against trial and barriers, from my perspective are a little less here. I mean, the most most common one really is access. I mean, not a lot of neurologists are very comfortable with treating anxiety with SS. Arise unless it's related to another medical neurologic condition on DSO. A lot of times this is managed by psychiatry, and certainly access and resource is to psychiatry are harder and harder to find, and then the caregiver buy in and perceptions what I mean by that is helping the family recognize that their anxiety or their sensory issues, looking at them as something separate from their autism to help them understand what the child is experiencing. And certainly we know that the higher functioning the child is, the more likely they are toe have anxiety. Um, and so, um, talking to the child and recognizing that while they have these features where they would prefer thio be separate or thio sort of isolate, they still see themselves as different. And so higher patients are higher functioning. Autism have a lot of anxiety around that perception and the Alere nous that they struggle with social interactions. Um, they could be very hard to diagnose because we're often especially in patients that are non verbal, were interpreting a lot of their physical symptoms, and especially with O. C. D. Howe I mentioned. It's a sort of a core feature of autism, the repetitive behaviors in, um, the compulsions and obsessions in a normal functioning patient without autism, they're quite unwanted, their intrusive. They don't enjoy those behaviors. But when you have a child with autism, sometimes those repetitive behaviors are actually quite welcomed and help to distress the patient. And so, while you're seeing the same physical presentation, the internal environment and emotional response can be quite different. So addressing anxiety can be challenging in these patients, to say the least. The Last Cochrane Review on SS Arise. Um, this one I want to say is from 2013. I think so. It's, you know, we're sort of getting close to having a new one. But 4013 was the last one and argued against SS Arise. But that wasn't necessarily, um, that review wasn't necessarily taken kindly by some of the other, uh, organizations that really treat and speak out for patients with autism. Um, there's been some newer studies looking at specific populations and specific situations or trying to find subsets of patients with autism. And rather than treating any patient with autism under the umbrella term, looking at, you know, high functioning with verbal skills. Or, you know, what have you to see if we can address that type of anxiety? And those newer studies that were a little better design are showing some promising data. Um, the hard part about the studies similar to all of them is that the sizes They're pretty small. It's hard to recruit. And again, we're looking at parental report as the primaries primary outcome measure as quite challenging to use that subjective data. All right, the next behavior that we, um, that I'm gonna talk about is the self injurious behavior. Um ah. Lot of patients have this. Uh, it's inversely associated with speech. So the more severely impacted someone is by their autism, the more likely you are to see aggression and self injurious behavior. Um, it's also associated with impulsivity. Eso even if you have a child that's high functioning with a D. H. D is quite high, you will see a lot of aggression. The thing to remember is that it might be a marker of low mood. So while you're seeing aggression as the primary symptom. You have to go back and think, just like in the last couple slides about anxiety and depression. Could it be better treated? Not within typical anti psychotic, but with an SSR I or a mood stabilizer? That's one of the challenging features here we know from other genetic syndromes like Trisomy 21 fragile X syndrome on a couple other developmental disorders on, especially in patients that have better language skills, that self injurious behavior, particularly biting and head banging, um, tend to be markers of low mood. That's why I'm patient with autism. It's just something to sort of keep in the back of your mind. Should I be thinking about, um, this as a as, ah symptom or a sign of something else? Not just the behavior, um, to treat this. This can get quite challenging, mainly because we're often trying to find these triggers, and sometimes it looks like there's none. It just that parents often tell me, Oh, gosh, it just comes out of nowhere. They just have this random meltdown, and I have no idea what's wrong. I try and ask them and that you know they can't get any clues. And so it's a lot of detective work for the families trying to identify any organic triggers. Oftentimes it's pain, things like constipation. Um, you have to think about Ah, lot of times these patients have poor dental health. And so we see abscesses. We see teeth that are infected. Um, cavities. Things like that can all be triggers for the self injurious behavior. So you have to remember you always want to try and look for triggers first and foremost when you can't identify triggers and it just seems to be sort of an ongoing pattern. Doesn't seem like the child is are really anxious. Um, then we move towards the occupational therapy. And again, sensory integration is the primary type of occupational therapy that tends to be helpful, mainly because it's it's constantly introducing the child to the specific situations that they're going to be in when they have this behavior and trying to do it in a controlled manner and then helping the families identify um, successful redirection strategies. Sometimes, unfortunately, it is just using an iPad and giving them a screen toe look at if it means they're less likely to hit someone or bite someone. But other times it's just a change in scenery. Ah, lot of times kids have decent, receptive language. And so, um, talking to them and helping them change the scene by Hey, let's go outside or let's go find your favorite stuff here. Let's play with the dog Trying Thio to redirect That way it can often be helpful. The pharmacology here, um, this is really the oldest section, because with autism, you know, when it was first diagnosed, there was not a lot of thought put into caring for these patients. They were often medically treated to suppress a lot of their behaviors. And so there's been a There's a lot of data Ah, lot of literature to go through, but really for aggression and and s I B we use beta blockers that atypical anti psychotics. Um, the antidepressants and mood stabilizers are relatively newer in trying toe address this, but they've got decent literature, decent data behind them, that that is promising. And then one of the newest things neuromodulation eso patients that have severe aggression and injurious behavior. Um, they have done trials of E C T. Which electroshock therapy. Um and it has quite a dramatic effect. The problem is that there's not good evidence these air very small studies, but how often it needs to be repeated and what the long term effects are on the developing brain. S Oh, this is used more often in adults. Um, and it's again very small numbers that have done it. But the results are quite promising. And then, as I alluded to earlier, the biggest barriers are education around, triggers routines and really, it's it's sort of re education a little bit when when I say that giving them a screen is is helpful. Well, then you have to go back to the root behavior. Why do they have so much screen time? And so a lot of it is helping families come up with healthy routines and appropriate, um, age appropriate behavioral interventions. Okay, And then the last behavior to touch on is our ticks and 80 HD. This is really knew because the d S M that changed in 2013. Prior to that, we couldn't make this diagnosis and a th and in autism. So, um, there's there's new data here really point about. There's there's old evidence and and studies looking at the impulsivity, um, in autism, but not really the ticks in the a d H d portion portion eso. About 40 to 70% of Children with autism are estimated to have a D. H D. About 20% was a tic disorder. Um, the part of the reason for concern here and why I like to talk about this one is we know that patients who have a D h d have a significant delay in their diagnosis of autism. And that's upwards of three years for boys around one year for girls because the way they manifest a D H D symptoms is a little different. But really having co morbid a D H D is a challenge because a lot of the features of autism are mimicked by 80 HD. And so trying to tease those to a park and really identify is it truly a core of autism with additional A. D. H. D is challenging, and so these kids often get delayed in their diagnosis. Um, we know that similar to what I mentioned with with O. C. D. That the the scales and the patient interviews that we use for those conditions like a D H. D ticks, obsessive compulsive disorder. They don't necessarily reflect accurately and patients that have autism, and so they might meet criteria again just based on the surface. But that's not really what's going on in that patient with autism so challenging to make this diagnosis. But when you do and when you address it, it can certainly help with behavior. We know that impulsivity and autism increases the risk of injury. It increases the risk of flight, which is a whole other issue that parents struggle with. Eso trying to improve impulsivity could certainly help with that. And, lastly, Poly Pharmacy. So a child that has autism is often on something for sleep there, often on something for their aggressive behavior. And if you throw impulsivity and 80 HD into the mix, it just adds the medicine that they're on. The treatment for a PhD is a bit unique because while everything else is really behavioral, there's not great evidence that the interventions we use for a th excuse me for autism have any benefit for the A D H D symptoms. And so, while I'd like to say we could try something that's behavioral. There's really no evidence that behavioral interventions help with impulsivity. Um, it's in the eighties in the in the autism specific population. Certainly in the 88 to population, there are environmental things You could do changes you could make. Those just don't pan out with the autism patient. So we rely a lot on pharmacology. And specifically, methylphenidate is one of the most common stimulants used, and it certainly can reduce. Impulsivity doesn't necessarily impact the overall function or the SC symptoms. But that reduction and impulsivity does improve the safety for the patient with autism and then a dome oxygen in a relatively newer one. Um, it's a nice one to use because it's it's certainly had in the studies that have used small studies, but the ones that have used it, um, looks like there's a decrease in 80 80 symptoms, and it's nice because it's sleep neutral. So if you have a patient that's sensitive to the stimulus, it's a it's a good option, alright, and just one quick slide here on this, Um, when we're talking about these behaviors, one thing we always have to keep in mind is what is the developmental age of this patient. So, yes, they have autism. Yes, they have difficulty with their social skills, communication skills. But if the child has other global delays and really there a 10 year old but they function more like a three year old, then I would expect them to have three year old behaviors, and that includes tantrums that includes separation anxiety. So trying to identify if that behavior is pathologic really depends on how much it interferes and disrupts their daily life. And so some things. If you if you expect that child to continue making gains and making developmental progress, sometimes it really is best just to sit back, help the patients with some behavioral interventions or modifications for the family to see if they kind of outgrow it. Um, it's It's a very fine line toe walk with some of these families and some of these patients, but really it is in the best interest of the child to see if there social skills improve as their developmental age increases aan den in addition to the developmental age. The other thing you have to keep in mind is Thea other, exacerbating environmental factors and by environmental I mean just looking at the whole picture. Is it truly a pathology of the child, or is there something in the home environment that's bringing out that behavior? And so it's not the child looks like it's a pathology. That their behavior is is not what you want to see. You want to treat that behavior. But really, what needs to change is the parenting style or whatever environment they have at school or at home. Yeah, alright, my rules when treating on and I say this with all the families as well. So they understand that we always look for underlying things, pain infections with the nutrition stuff, especially. We look for other metabolic issues, hyponatremia, things like that that can really lead to some of these behaviors. I always tell them that my first line is going to be behavioral, and if they don't want to try the behavioral, they're gonna have to see someone else, because that truly is the primary starting point for these families. And then if they're doing good with behavioral, but there's still some room for improvement, then we use pharmacology to enhance that therapy. Um, just for you guys, if you do end up starting any medications just to remind you this population is very sensitive to side effects. So the mantra is to start low and go slow. All right with that, I will do a quick overview of the pharmacology, mainly because I don't expect, Um I don't expect you to be that familiar with this, but I want you to know some of the things that we use because if you are trying to help temporize these families as their, you know that the first line out there that I want you to know what we typically use. So we have anti psychotics, the alfa antagonists, stimulants, SS arrives, beta blockers and mood stabilizers. So for the anti psychotics, if you were going to use this what you need to know, you have to get an e k g. They need a cholesterol panel on a fasting glucose, and then a one C. And most insurances, especially the state insurance, is depending on where you are. They will not approve this medication if you're not getting yearly surveillance labs because these kids are at risk for dysrhythmia do at risk for diabetes and high cholesterol. The most common one uses respirable, um, meine side effects, weight gain and Agathe Jha. The ones I see most often we use quite typing mainly for sleep and Eric papers. All our Abilify is used more often in patients that are higher functioning. And they've got some, like, sort of O C D type symptoms. They just need a little bit to help them quiet the internal stimuli to improve their function. Okay, the next one is your Alfa agonist. Uh, this one with this class, you do want to check blood pressure and especially with clonidine, I would consider getting E k g. Mainly because there is a reported risk of a V block with clonidine. Certainly doesn't happen very often with Patrick's. But, um, I generally practice precaution, and so I get an e k g with most kids before starting Alfa Agonist. I you do see some sedation and some g I upset with ease, but generally they're very well tolerated medicines. And then the last thing I would say about claw knitting this is when you certainly want to taper off of because you can't have withdrawal symptoms from quantity stimulants. Plus, um, this is mainly methylphenidate. You wanna monitor blood pressure and weight because just like any other child you guys see with a d h d. Their patients with autism are at risk for the same side effects and so decreases appetite and that the ad allergic effect can increase blood pressure. There is a risk of sudden cardiac death in adults. Um, they're good studies on this in pediatrics, and that has not been demonstrated. So this is not typically, uh, one of the things that I talk with parents about. I bring it up, but it's not typically a concern because it's not been demonstrated in Children. Adam Oxygen is a nice one because it is not a stimulant, but you still get some benefit for the A D H D symptoms. Um, but it can cause some headaches. And if you have a child that is nonverbal. Headaches could be hard to diagnose because they don't always tell you what's wrong and can cause a lot of behavioral symptoms. Anti depressants. You guys are very familiar with these. Um, there is the black box warning for the autism patients. Just like any other pediatric patient increased risk of suicide, you have to tell their families about it. But again, depending on the functional status of the child, that may or may not be an issue, especially in patients that are using other medications, some anti psychotics and especially stimulants. There is a risk of serotonin syndrome when you use antidepressants, so that Poly Pharmacy is certainly important to keep in mind. The I think the one that has the most data is to telegram Um, and then Vanlev Vaccine is one that's got emerging data just because the norepinephrine serotonin added peace there, Um, thes air used sort of interchangeably. Uh, it depends on how sensitive the child is to the activating versus the dating side effects. What? I'm starting any of these. What I tell families is to pick a random Saturday and give it to them on a Saturday morning. And then if the child is tired, then they would transition and give it to him on Sunday night. But if the child is activated by its and what we often see and flew oxytocin, um, then they would continue giving it to him in the morning. But just because it's a common side effect for the general population does not necessarily mean that's what you're going to see in the patients with autism and then our beta blockers. You guys probably have more experience with beta blockers than I do just for other purposes. But for some of the self injurious behavior, more commonly, what we use this you do wanna monitor blood pressure and you do wanna wean off of them to you don't get the rebound hypertension. And I put dozing on this one just because you guys air familiar with beta blockers for blood pressure and other issues. But for behavior, the dose is slightly different. And then, lastly, our mood stabilizers. Um, these air is sort of an emerging class to be used in patients of autism, so the data is much less but very promising. For the most part. With these medicines, we do typically get baseline labs because they can't have some metabolic arrangements. Sometimes these medicines are a harder sell to the families because of the side effects and specifically the risk of Stevens Johnson syndrome. With with Depakote and Lenotre. Gene, Um, it's rare, but it certainly is is worth having the conversation on. But the fact that you have Thio do surveillance labs with some of them. Sometimes families are a bit against that, depending on the functional status of the child. But pretty good evidence on using these medicines. So when do you use each medicine? Um, this is probably the most helpful slide here. So if we're dealing with aggression, then typically it's atypical antipsychotics, Mood stabilizers in beta blockers. I'm not going to read the slide word for word for you, but I thought I would lay it out. That this is if I'm seeing a child and they have X behavior thes of the medications that I'm typically going to consider. Now that is all the information that I have to share with you. But I want to make sure that you guys were aware that U. C. S F is open. I know a lot of clinics are virtual but specifically for neurology. We're seeing patients in person. Our availability has not changed at all. So each neurologists in our department has at least one day if not mawr of in patient visits or in person visits, and then the same amount that they had pre co vid. They also have as telehealth visit. So if you have any concerns or questions. We welcome you to refer to neurology. We're open and we're happy to help. So this slide just has our referral information for UCSF in general. And then, if you have specific questions about the neurology department, the pediatric brain center, UCSF does have two locations. We've got the East Bay at the Children's Hospital in Oakland, and then we've got the Mission Bay campus in San Francisco. In addition, we have satellite clinics throughout the East Bay. I know habits. I mentioned the beginning. I see patients in San Ramon and Brent went in addition to Oakland. And if you have questions, you can always get 24 hour support through our access line, and we have a PVC specific access line. In addition, that is available 24 hours
