Connections between autism spectrum disorders and seizures during COVID-19
June 1, 2020
Welcome to At the Forefront Live. Today, UChicago Medicine Comer Children's pediatric specialists discuss the connections between autism spectrum disorders and seizures during COVID-19. Is there any special care for kids experiencing these situations during the pandemic? Epileptologist Dr. Emily Doll and behavioral and developmental specialist, Dr. Peter Joseph Smith will discuss specialized care options for kids with autism spectrum disorders or seizures during COVID-19. They'll also answer your questions. That's coming up right now on At the Forefront Live.
And we want to remind our viewers that today's program is not designed to take the place of a visit with your physician. Let's start with each of you, introducing yourselves and telling us a little bit about yourself, and let the audience know what you do here at UChicago Medicine. And Dr. Doll, we'll start with you.
Hi, my name is Dr. Emily Doll. I'm a pediatric neurologist an epileptologist. That means I specialize in children with epilepsy and seizures, and I have a special interest in autism spectrum disorder.
Fantastic, Dr. Smith.
Hi there. Thank you. I'm a developmental and behavioral pediatrician. I am a member of the faculty for almost 20 years now. And I also take care of children with autism, along with other developmental behavioral pediatric difficulties, Down syndrome, learning disabilities, and ADHD.
All right. Dr. Smith, let's start with you, and we'll get right into the questions. Can you tell us what autism spectrum disorders are?
Sure, autism spectrum disorders are a group of related but variable disorders that present with three main difficulties in the children and the adults that we see and we say who meet criteria. The first criteria or the first kind of group of difficulties are difficulties with language. The most common presentation in early childhood is that children who meet criteria for an autism spectrum disorder have delayed language.
Although it can be that they actually have more language than other children their age, they're what's called hyperlexic, but they use it atypically. In fact, a child I saw just this morning fit into that category. And this type of language difficulty, as the child grows and matures, can then present in other ways. For instance, they may have what are called scripted language, whereas they take phrases or entire paragraphs that they've heard either other people speak to them, or very frequently off of videos, and then they repeat them.
And they can often be very good imitators and repeaters of those scripted phrases. So it's generally that first category are language difficulties in many different ways. The second kind of bucket or area of difficulty is difficulty with social interactions.
So again, in early childhood that frequently first presents by having difficulty maintaining eye contact, playing with other children their age, or being able to form social relationships. It's not that they're not affectionate. Very frequently they are. But they often have difficulties with the skills of social interactions with their families, and especially with strangers.
And then the third bucket or category that is part of the criterion of autism spectrum disorder is an area that's very broad. It's atypical behaviors. And these behaviors can be sometimes physical, like hand flapping or unusual finger movements. They can be a little more psychologic in the sense that they have OCD type behaviors where they line up their cars or line up their toys.
Or they can be kind of tactile and sensory, where they have difficulty either interpreting information coming into them, such as loud noises like the vacuum and blender really set them off, or they have difficulty with physical feelings, clothing bothers them. Or they can be very picky with eating. They're very sensitive about textures or tastes.
And if an individual, a child, comes to see specialists like Dr. Doll and myself, we see that they meet all three of those criteria, then we say they have an autism spectrum disorder. It's really important that we recognize that within those children who meet criteria, there's a wide variety of difference. That when you teach people about this, sometimes you say-- if you've met a child with autism, you've met one child with autism. And other children may be very different. And so it's a very complex group, which makes it somewhat complicated for families and sometimes even clinicians.
Dr. Doll, can you tell us why are seizures and autism often connected?
This is the ultimate question. And it's something that there's been a lot of research about. But certainly, they are connected. Our research has found that as many as 40% of children who have autism also have epilepsy, though other studies have shown lower numbers of those two disease processes.
But the underlying thought that we have is there's something that's disrupting the neuronal connections in the brain that causes both of these things. Lately there have been a lot of advances in the field, and we've found that there are several genetic disorders that cause both. So there are certain processes in the brain that disrupt both.
We've also found a lot of patients who have autism have an abnormal EEG, and looks like a patient who has epilepsy, even if they've never had any seizures. So that proves to us that there's something in the brain disrupting these neural networks, but we're still working to find exactly what that may be in cases where we have not identified a genetic predisposition to both.
We want to remind our viewers that we will take your questions during the program, try to get to as many as possible over the next 20, 25 minutes or so. I guess my next question would be, so when you look at the connections between seizures and autism, can seizures bring on autism? Or vice versa, can autism cause seizures?
It's another very excellent and very researched question. I'll start with the question can autism bring on seizures, because that's a little bit of an easier answer. For the most part, the answer to that is no, from what we know. Sometimes people with autism don't begin to have seizures until later in their life.
In fact, almost half of patients who have autism and epilepsy don't have a seizure until after the age of 10. So it may look as if it's the autism that's causing the seizures, but again we think that it's the underlying cause, if it's a genetic, or environment, or a combination of the two. We think that whatever is causing that underlying, that's why seizures develop later.
To answer the other question, can seizures bring on autism, for the most part the answer to that is no. However, there are very rare cases of epilepsy that can cause not exactly autism but autistic features. So if your child or a person you know develops autistic features later in life, after the age of two or three, it's very important to bring this attention to your doctor, and to see a neurologist so we can investigate if there may actually be seizures that are the cause of the new autistic features. Other than those rare cases however, no, we don't think that seizures cause autism.
So what are some of the signs or symptoms of seizures? What do parents need to look for? And one of the things that I heard, I thought this was very interesting, one of the doctors was talking about videotaping seizures when they happen, because that's helpful for you all. Can you talk a little bit about that?
That i s extremely helpful for us. People say a picture is worth a thousand words. If that's the case, a video must be worth two million words for us. We have seen, as epileptologists and neurologists, we see a lot of seizures, and we're better able to differentiate if something looks like a seizure to us if we have the video. But the most important part is making sure your child is safe. But if you're able to record it and bring that to your doctor, it's very helpful.
But things to look for seizures. They can come in a lot of different shapes and sizes. The things we see on television in the media is what we call a generalized tonic-clonic seizure. That's when the patient is stiff and convulsing. But seizures can be much more subtle. If you see stiffening or rhythmic jerking of one arm, one leg, or one side of the body, including the face.
Or sometimes they can be more subtle like the patient is staring off an unresponsive to you. This can happen frequently in autism, and actually typically developing children. So if you notice your child is frequently staring off, try to get their attention often by touching them. Tickle them, or do something a little bit obnoxious.
And if they respond to you, it's very unlikely that it's not a seizure and they're just zoning out. But if you notice they're not responding to your tactile stimulation in attempts to touch them, it's important to bring this attention to your doctor.
A few other things we sometimes notice with seizures that we don't know are occurring is if you see a sudden decline in academic performance. So grades are suddenly dropping. Or in autism, you might see new onset regression, or worsening in sleep. If these things happen, please bring this to your physician's attention. It's possible that we're missing seizures.
So is there an age range where parents really need to be aware? Does it typically happen at a younger age or an older age for children, as far as either developing autism or having seizures?
I'll speak to the seizure part. It can happen at any age in children with autism. And in fact, epilepsy in general can start at any age throughout the life. A lot of adults have their first case of seizure in their 40s, 50s, or even 60s. In autism specifically, we see two peaks. The first peak is young children before the age of five, particularly under the age of one, which is even before autism is diagnosed. And then we see [AUDIO OUT]. So always be on the lookout, but those are the two main times you'll see this.
Interesting. And let's talk a little bit about COVID-19, Dr. Smith, if we can. Is there any special care for children that have autism or are on the autism spectrum disorders, or have seizures during COVID-19? Is there any differences?
Yes, I think that this is something that all of us, of course, were a little bit caught off guard by, having to be inside as much as we are and to not be in school. And we're still figuring this out in general. But in my clinical practice and in talking to colleagues across the country, it seems that the majority of children, particularly those who are on the spectrum, who are used to routine, who are used to having the therapies that are provided both at school and outside of school, the loss of that for a lot of them has been very hard.
Probably 75 to 80% in my estimation, I don't think there's been a study. And that is hard for them. It's hard for their families. And some of my patients have even developed new misbehaviors, including even some, fortunately a smaller group, but with aggressive misbehaviors. And we've done a lot to try to minimize that and to help maximize their comfort.
One of the first piece of advice I give to families is, this isn't normal. This is hard on all of us, including us physicians and parents. And so we have to kind of tune our expectations to the moment. And that's the moving target, as we all move through this pandemic.
And the first week, I spoke to a mother, and she was trying to do the behavioral therapy, the ADA, and trying to do the schooling. And she had other children. And she was, even after a week was sort of burning out. And I said, look, you know, you can't do it all. We have to pace ourselves. So that's kind of the first rule.
Second thing I tell families is that during this time where there aren't general external things that are causing us to have a routine, we can begin to help children to have a routine in several simple steps. One would be to develop a visual schedule.
So all of us do better when we're on a routine and on a schedule. And for the children who are on autism spectrum who are of school age, going to school is a major part of that. Not only because they're getting therapy there, not only because they're being taught there, but also because it gives them a rhythm, it gives them a routine, it gives them a structure to their day.
And then many individuals on the autism spectrum do best with structure and routine. So developing a visual calendar, a visual schedule at home, you know, maybe day to day, that the child can see. Because many children with autism spectrum, as I mentioned, have language difficulties. So if you have a visual schedule, pictures of a clock, and pictures of the activity that are matched, that march through the day, that can often give a frame of reference to the child. It can often help them to better understand the day to day routine and kind of get back on a routine. And for some families, they find this very powerful.
When families do this, I encourage them to start small and slow with just a few things on the schedule. Ideally the things that the child they know like, so they begin to like the schedule. And then build it slowly over time. And then the third thing I recommend families to do-- this is a general recommendation across all childhood, but particularly in children who are used to moving more and especially those who have a sensory things that I mentioned --getting exercise is crucial.
All of us are moving less. All of us are getting fewer steps. I haven't met my 10,000 goals in a-- step goals in a while. And I think putting onto that schedule twice a day, we're going to bounce on the trampoline or we're going to-- you know the mini-tramps they have at home, or we're just going to walk around the block in a socially distant way. Whatever we can do to move the body around. That can often decrease that anxiety, the irritability. And so those are some of the general kind of recommendations.
For each individual family, we also create very specific programs that sometimes even includes medications, but for the most part are behavioral interventions, as I mentioned.
I think those are all fantastic suggestions for, honestly for families with children in any situation, because again, this lack of schedule I think is a significant issue for families. And exercise obviously very important. We are starting to get some questions from viewers, so I'd like to get to those as we can. First one from Bonnie. Do you find that diet change helps with these conditions? And also a kind of question to tack on that we got earlier. Should children with autism be on gluten free diets? Does that make a difference?
I'll start, and I'm sure Dr, Doll will have her take on it. In certain specific children with certain specific conditions, dietary restrictions can be helpful. The University of Chicago actually has one of the top celiac disease programs in the world. And so if families have questions about that, particularly the gluten question, I always recommend that they see Dr. Jericho and the other experts in the Celiac Disease Center, because they are up to date in helping families understand what testing needs to get done and what kinds of specialized diets, if any, are needed.
In general, we recommend against restricting diets in this population, partly because as I mentioned earlier, many are already fairly picky and are on a limited diet. So further restricting it in rare circumstances can cause significant malnutrition that I and my colleagues have seen.
In terms of other kinds of dietary manipulations, as I mentioned, within the autism there a lot of subgroups. And so people have recommended many different kinds of treatments. I think that it's unlikely there's going to be one dietary either restriction or supplementation that helps all children.
I think in the future, we may be able to better discern the subgroups and better know which ones would benefit from certain supplements or maybe restrictions or avoidanceses. But at this time, as a general recommendation, I'm very cautious about making those, especially because as a pediatrician I like to feed children. I like to see them grow. And as we learn more and more, I think we will be better able to determine the subgroups of children that may benefit from these therapies.
And Dr. Doll, I would like you to jump in on this, because I do know at times, particularly in people with epilepsy, that diets can be helpful. So there's a bit of a balancing act here, I would imagine.
Absolutely. There are a few conditions that are usually very rare, but there are a few metabolic and genetic conditions that can cause epilepsy and autism that do require a specific diet. And so talking to your provider about that is important. But there's other diets that are actually used very commonly in the treatment of epilepsy.
And one of them you may have heard of is the ketogenic diet. We do it a little differently here. We require more intensive lab work than the kind of layperson evaluation of the ketogenic diet. But we have a ketogenic diet clinic here, where you meet with one of our epileptologists, an associate of mine, and a dietitian. And they kind of talk through what the diet will look like for you and your family, so you can kind of decide if this is something that will work for your child.
And then you kind of see us for frequent follow up to make sure that the diet is working for you. And there are some other variations on that as well, including something called the modified Atkins diet, which is a little less stringent and a little easier to abide to. And so those can be actually used in a lot of cases of epilepsy, including children with autism, if it's something that will work for your family.
Another question from a viewer. Are migraines connected to autism in any ways?
I have seen patients who have both migraines and autism. Sometimes it's really hard to differentiate, though, when a patient with autism who has trouble communicating, if what they're experiencing is migraine or a headache, or even seizure sometimes those two things can be confused.
So it's something here that we can kind of help parcel out and look at both of those things, sometimes actually by bringing them into the hospital and getting a prolonged EEG. So we have a scheduled admission. We call ahead of time. We talk about certain sensory needs your child has, or other needs that they'll have to kind of help get them through the admission. And then we have the EEG on to actually try to capture the events that we're wondering, could this be seizure, could this be headache, or could this be something else. And that sometimes helps us to differentiate.
Another question from a viewer. How common is autism? Is it becoming more frequent? Or are we just better at recognizing it now?
The rates of autism were just changed by the Center for Disease Control, the CDC, in March. The new number that's now being used for the United States is 1 in 54, which is an increase, to answer that first question, along with the second one together. We believe there are at least three different reasons why the number of autism are rising. Because, yes, the number of individuals who are identified as meeting criteria for autism has risen dramatically in the last 20 to 40 years.
The first reason is, as the question alludes to, we're looking for it more, and so we're finding it more. So some of it, it does definitely relate to our ascertainment of the individuals with it in meeting criteria for it.
The reason we're looking for it more is because about 20, 30 years ago, it was shown that there were treatments that were effective that changed the outcome for the better. And so then when you have an effective treatment, there is much more strength and passion to finding it so you can treat it and make it better.
The second thing that's going on is a little bit part of that ascertainment. We've changed the rules or the diagnostic criteria for who meets criteria-- who meets the criteria for autism, who has autism. And in a general sense, it's sort of as it were easier to have the diagnosis than it was in the past.
We see that-- we're looking at the entire spectrum. In the past we looked at a smaller group of individuals and said that they had autism. Now we recognize that there are individuals that have difficulties that are not like the classic definitions of autism but do meet criteria, and do, most importantly, benefit from services.
And the third issue, which is harder to prove because of those first two problems, is that we do believe there might be an increase in the overall number of individuals who meet criteria, even if we took out those other first two things. We're not certain of that. And there's no way to prove that.
But there's a general sense, especially for the people who've been in the field for long enough, that there might be a slow but steady rise in numbers. And again, that can't be proven and we can't know that for sure, but there's a lot of people investigating that and investigating, well, what might be the cause of it. Either genetically, in terms of all sorts of different possibilities, or environmental triggers, or changes in society.
So I have a question that I want to throw out to both of you, because I think this is pretty germane to what's going on. We've talked with some of our other physicians about video visits and how well they've worked, and they seem to have been universally accepted. People really like them. But I'm kind of curious about either children who have seizures, or children that have autism, or both. What are your thoughts on that? How helpful are video visits? And what would you recommend? And Dr. Doll, let's start with you on this one, if we can.
It's impressive how helpful video visits can actually be, particularly in autism and epilepsy. A lot of the visit that you have in pediatrics is observation. So while we're getting a history from the family and we're talking to the family members, you might notice that we're actually often have our eyes on the child.
And so doing this in the home environment can also be very helpful for us, especially in cases of autism, because we get to see how they behave at home and how they interact with you in an environment that they're more comfortable with. We have kind of found ways to perform the neurologic exam via a video visit. And we're all becoming much more comfortable with this as this as time has gone on.
And for the most part, we can really do most of the exam remotely. There are certain things that you'll have to come see us in person for. These things include if there's a new onset or worsening in weakness or issues with strength or issues with sensation, as well if we have to look in the back of your eyes for like new cases of migraines.
So there are certain times that we'll have to say, I'm sorry, we'll have to see you in person. But by and large, most of our visits, both new and follow up visits, can be done remotely now.
Fantastic. And Dr. Smith, your thoughts on the video visits?
I agree entirely with Dr. Doll, that I'm older and technology is not something that I'm as good at. And I must confess that I've been shocked and surprised in a positive way how powerful this instrument is. And I really think it is part of the future, and maybe one of the silver linings of this terrible pandemic.
I agree with Dr. Doll, that seeing children in their home environment can offer us insights that we can't get seeing them in clinic. Many children, especially with the sensory sensitivities or other anxieties or difficulties getting out of their routine, come to the clinic and they may look much different than they would than we can peek into their homes.
Another thing that's really important is that a lot of what we do, especially initially, is take a history and talk to families. And this kind of interaction allows for that very deeply. And in fact, if you see the child and then get a little bit of that, and then they're allowed to go and play, because they're in their home environment, they can not have to watch the child and worry about them getting hurt by our equipment in the hospital.
And so they can more focus on me, and I can get a richer history. I've been very pleased at that. I do think, as Dr. Doll said, that we're going to need a hybrid model going forward. There are some things, particularly some of the diagnostic maneuvers that we do, some of the testing that we do, that has to be in person. But overall, I've been very pleased with experience, and I'm excited.
And we've been able to maximize and see a lot of people-- we frequent have a long wait list. We've been able to reduce our wait list now very significantly. The chance to see a developmental pediatrician prior to pandemic on average across the country on a committee that I'm on nationally was 6 to 12 months. And now we're down to 6 to 12 days at the University of Chicago. It's amazing.
That's some positive news out of all of this. And we don't have a lot of time left. We're about five minutes roughly left in the program. But I'm getting several questions from viewers. So let's try to get through as many of those as we possibly can. This one is from Nora, and she has a follow up as well, which I think we've already touched upon. But the initial question, what's a good age for a medical diagnosis for a child with seizures? And her follow up is, can you do that type of diagnosis remotely?
We can. We always would like to see the patient at some point to get a good examine. But just like Dr. Smith was alluding to, time is of the essence in diagnosing this, and since so much of our history taking can be done remotely, and a good portion of our exam can be done remotely, we can certainly do new visits. And we're seeing those a lot too. Our wait time is also definitely down.
As far as the optimal age to diagnose epilepsy, it's really just as soon as possible. Since patients can develop seizures at any time, the sooner we can get this diagnosed appropriately, and if necessary start medications, then the better chance we have of getting the seizures under control.
But not really a specific age bracket that you would say, right?
No, because it depends on when the patients start having seizures. Some patients who later develop epilepsy start having seizures very, very young, within the first few days to weeks to months of life. And others don't develop it until adolescence or even adulthood.
Here's a question from Chris, and this is to Dr. Smith. You mentioned that about 20 to 40 years ago they were effective treatments identified. Can you discuss some of the treatment options? And again, we've only got a of minutes left.
Sure. I'll be brief. The treatments for autism include both global treatments that include schools, early childhood development programs, and then later educational programs through the elementary and then public schools.
They also include therapies, speech therapy, occupational therapies. And specific to autism, there are behavioral therapies and behavioral interventions that have been proven to be effective. The best known probably is ABA, which developed by Dr. Lovaas in Los Angeles and spread across country. But there are several others that have been formally endorsed by the American Academy of Pediatrics in its most recent guidelines that came out in January.
These include DIRFloortime and pivot response training, and several others. I'd encourage people to go to that document. That's available in the American Academy of Pediatrics website, that goes through these different therapies and their advantages.
One more question, and we'll try to get this one in, and if we go a little long, that's OK. John will edit it down for television. Sorry, John. This is from Kat, our neurologist, has recommended that we enroll in a rare disease study for our child who has seizures and autism because after several EEGS, they can't figure out what's causing the seizures. We've reached out to studies, but haven't had any luck. What do you recommend? That's a tough one.
That is a tough one and it's something that you may need to speak with your neurologist specifically, because it depends on what their thought process is. Without having known your child, I don't know which direction they're kind of thinking with the underlying genetic abnormality.
But there are some disease networks out there. There's something called the Undiagnosed Disease Network, and there are other kind of national networks and trials that do exist. So absolutely bring that up to your neurologist if you're one of those tough cases. And always consider asking if you need a referral to a tertiary epilepsy center. Pediatric neurologists can handle epilepsy, but once it gets to the point where we're having a hard time finding an answer, you may need a referral to a pediatric epileptologist.
Fantastic. This is wonderful advice, and I really thank both of you for taking time out of your day to be on the program, because I think this is so helpful for parents. But we're out of time.
We'll have another At the Forefront Live of course in the next couple of weeks. Please remember to check out our Facebook page for our schedule of programs coming up in the future. Also, if you want more information about UChicago Medicine, take a look at our website at uchicagomedicine.org. If you need an appointment, you can give us a call at 888-824-0200. And remember, you can schedule your video visit by going to the website. It's really easy to do. Thanks again for being with us today, and I hope you have a great week.
Research shows that it is more common for children with autism spectrum disorder to have epilepsy and experience seizures and it is more common for children with epilepsy to have autism spectrum disorder. The Autism Spectrum Disorder and Seizures Clinic at University of Chicago Medicine Comer Children’s Hospital is specially designed to diagnose, treat and manage patients with both disorders.
What is autism spectrum disorder?
Autism spectrum disorder (ASD) is defined as life-long developmental disorders of the brain with variable degree of severity. About 1 in 54 children in the United States have been diagnosed with ASD and it has been found that up to one-third of children on the autism spectrum are shown to develop epilepsy.
What is epilepsy?
Epilepsy is defined as two unprovoked seizures or one unprovoked seizure with a high probability of recurrence. Many things can cause epilepsy including genetic disorders, infections, immune disorders and genetic causes. Structural causes like trauma and stroke can also lead to epilepsy. Epilepsy is diagnosed and treated by pediatric neurologists or an epileptologist who is a pediatric neurologist that specializes in the diagnosis and treatment of seizures and epilepsy.
What makes diagnosing seizures in children with ASD challenging?
Children with ASD may have stereotypies, which are repetitive movements or sounds such as body-rocking, hand-flapping, head-nodding, or pacing. It is these abnormal movements that may make caregivers question whether their child is having a seizure.
The abnormal movements can either fall in the movement disorder category or be due to behavioral difficulties, or due to communications and cognitive deficits. This is why the experts sought to create the Autism Spectrum Disorder and Epilepsy Clinic. When both an epileptologist and a developmental and behavioral pediatrician are able to see the patient at the same time, they are able to develop a complete diagnosis. This limits the number of times the family will need to see a doctor to arrive at a multi-disciplinary approach to diagnosis and treatment. Also, it’s important that seizures are treated as soon as possible as undiagnosed or repeated seizures can result in adverse effects on the brain.
What are some indicators of seizures?
Caregivers should pay close attention to the child’s behavior. Staring episodes, body stiffening, rhythmic shaking, and loss of attention with the inability to quickly snap out of it, can all be signs of a seizure. It’s always helpful if caregivers can capture any of this behavior on video to share with the clinic.
Does this clinic offer video visit appointments?
Yes. For now, the Autism Spectrum Disorders and Seizures Clinic is only seeing patients via video. This format has proved effective as some patients with autism are uncomfortable in the unfamiliar environment of the exam room. Watching the patients where they are most comfortable allows for a more comprehensive view of the patient.
Emily Doll, MD
Emily Doll, MD, is a highly skilled pediatric neurologist who specializes in childhood epilepsy. Dr. Doll is committed to providing her patients and their families with comprehensive, multidisciplinary care for epilepsy.See Dr. Doll's profile
Peter Joseph Smith, MD, MA
Peter J. Smith, MD, MA, is board certified in two sub-specialties of pediatrics, neurodevelopmental disabilities (NDD) and developmental-behavioral pediatrics (DBP).See Dr. Smith's profile