Does the severity of autism symptoms change during childhood?

[Music] welcome to our Facebook live where UC Davis health experts provide information that you want to know I'm Pamela Wu and with me today from our world-renowned mind Institute is dr. David emerald and PhD candidate and graduate researcher a Matt wise guard Barkov today we're going to be discussing autism and children and some of the latest research related to autism and kids this includes my guests latest published study on how autism severity can change substantially during early childhood if you have questions today you can post them in the comments and we'll do our best to answer them toward the end of the discussion dr. Amaral and Anna thanks for being with us this morning I'm happy to do it Pamela so glad that you're with us and let's begin with you and some background on this what are some of the early symptoms of autism in children so when children a lot of times we'll see children not sharing things that they're interested or excited about with their parents like seeing a plane going by in the sky we'll see them not being interested in interacting or playing the kiss their age they might not answer when their name is called or use body gestures to communicate like pointing the things that they're interested in and and we'll also see repetitive behaviors so when they're playing instead of like playing with toy cars we'll see them lining them up instead of really playing with them these are just some examples of symptoms in early childhood doctor ever all your latest research indicates that the severity of autism symptoms can change between 3 and 6 years of age and by the way we will put a link to that paper in the comments so folks can take a look at it how would you summarize what you found right so Pamela this is a study that is one of many studies that have come out of what we call the autism phenome project that project started at the mind Institute in 2006 and the goal of the project is to bring children into the mind Institute just after they've had their diagnosis and then literally follow them through life to see how their autism changes over time we also carry out magnetic resonance imaging of their brains so we can see how their brain is developing over time and so in this study we examined the level of symptom severity when they were three when they first came into the study and then three years later when they were about six and we use something that's called this the gold standard of how you diagnose autism it's called the ADA's for short or autism diagnostic observation scale and what it measures is the the ability of a child to interact socially the less a child interacts socially we would say the more severe their autism is and as Tina said the other characteristic is repetitive behaviors and the more repetitive behaviors they do which doesn't allow them to do more productive things the more severely affected we say they are and so what our study did is to compare the level of symptom severity when the child was 6 compared to when they were first diagnosed at 3 and what we found was that about 50% of the children had the same level of severity at the two different time points but what was different from what is generally thought of in the field is that 50% of the kids actually changed pretty substantially over those 3 year period about almost 30% of the children decreased in severity significantly what would be a meaning clinically meaningful decrease in their severity and on the other hand about 18% increased in severity over that time period one of the interesting facts that we were able to evaluate because our study includes a higher percentage of girls with autism girls have unfortunately been under studied in historically in autism research but we have recruited a higher number of girls into this study and what we found was that girls tended to show greater decreases in severity than boys and less increases than boys so that we actually did see a difference depending on whether you were a girl or a boy I can't recall if you mentioned this but how many children were involved in the study right I should have mentioned that there were 125 children with autism which is a fairly large number compared to most studies in the literature and how would you describe the potential significance of these findings yeah well there's there's lots of things first of all I think we're trying to better chart the life span of people who have have autism to understand you know what is the potential for change or what is the potential for change over time and I think what we historically I think people viewed autism is once you've received a diagnosis at 3 pretty much for the rest of your life you're going to have that level of diagnosis or that level of severity what our findings show and other papers as well that are coming out recently show that there's a lot more dynamism in in autism in terms of the symptom severity and to my mind that means that this more potential for for reducing the debilitating impairments that are associated with autism we just need to figure out how to do that better when one of the one of the issues that we looked at was whether the kids who did better we're getting more intervention and the kids who did worse and it turns out that wasn't the case now all of the kids were essentially getting you know the same level of pretty intensive intervention starting when they were about three but we couldn't find a relationship between the intensity their intervention and whether they did better so that means they must be something else that determines who's doing who's gonna do good and who's not going to do so good over those first early three years of life and one of the things for our research effort is now to try and figure out can we come up with a biomarker some kind of indication that when the child is 3 that indicates this is a child that's going to do well and we want to promote that but maybe this is a child who's not aiming at doing so well and we need to do something more something you know different than what they're doing in order to try and get them the best quality of life that is really fascinating and not the paper refers to you know kids improving as you were observing them what does that mean what does improvement look like well when we say improvement we mean that as kids decreased in the severity of their autism symptoms they became more socially engaged with others and the level of behaviors wind was decreasing so they were less occupied with that and we also found that this group of kids who decreased on symptoms they were also gaining an IQ and an adaptive functioning so when we're looking at them we see that in parallel to the symptoms being less prevalent and their behavior they're gaining in cognitive ability and in in functioning in areas like communication and their independence skills say their daily living skills so when you look at all that as a whole you see that the kids are generally improving over the childhood I'll invite both of you either of you to weigh in on this next issue and that is that more boys and girls are diagnosed with autism if this because girls diagnosis are being missed or the diagnosis is is delay because I know that you you looked at this in your paper yeah well maybe I can start and then a not can weigh in as well but so this reason of the question of why more boys get diagnosed than girls is really a complicated issue and I think there's not a single reason there's multiple reasons and probably the reasons that we haven't figured out yet so I think on one level there are biological differences and girls and boys obviously and for a long time people have talked about the fact that girls have a protective effect and what that what I mean by that is that even if you look at the genetic causes of autism it turns out when you look so we have lots and lots of genes and it turns out it's rare that just changing one gene is going to cause autism you have to change multiple genes and it turns out when you look at big populations of boys and girls the number of genes you have to change to get autism and a boy is fewer and you have to change in a girl so in a sense a girl needs a bigger genetic hit or more genetic change in order to show autism so so the other way to think about that is if a girl has or if a boy needs five genes to be altered to develop autism if a girl has five genes those same five genes then she's not going to show our Tisza means to have ten genes damaged in order to show autism so that does seem to be some biological causes to the disparity and the number of girls and boys and this isn't so strange because we know that there are other diseases disorders that affect boys or girls more so for example more men have Parkinson's disease which is a neurological disorder than women more women have osteoarthritis than men so there are differences in susceptibility and we think that this is the case for autism as well but it then it then there's another layer where things haven't been so well explored and that is that maybe girls with autism for a variety reasons are hiding their autism and and so as you said they're not being detected or they're being detected later and you know why would girls be better able to hide their autism he not has some thoughts about that okay and and also I wanted to add that when we assess autism we're using measurement tools which have been developed for a long time based on autism research and like David said traditionally autism research usually involves samples of boys a lot more than girls so these tools for assessing symptom and symptom severity and giving diagnosis they're based on what we know about autism in boys and the symptoms and girls when girls do have autism their symptoms might be different either less obvious or of a different quality symptoms of boys so if in if we're using the tools that we have it might very well mean that we're diagnosing less girls or in a later age or just missing them so so like David said it's a complex it's a complex set of reason for what's happening with girls one of the things Pamela that that happens is you know boys and girls are raised differently moms and dads treat little boys differently than they treat little girls maybe that's not happening so much anymore but it historically SS happened and so I think that there's more of an attempt on on parents to be more emotional and being more social with little girls than with oils and as in a sense there's an expectation for girls to be more social and get engaged and little boys and so one thing one thought that we have and certainly we haven't proved us is that just the way boys and girls are raised might actually get be giving more intervention in a sense parental intervention to little girls than to little boys a lot of what intervention is an autism is trying to to get children to engage socially and if that's the expectation for girls where the boy is naturally they're going to be getting more parental intervention the you know the other thing too is that I think even even young girls but certainly this is the case where all the older girls and women have sort of a heightened social understanding of social interactions and social expectations and so one of the other things that we talked about in the paper and again this is a hot topic now in autism research I think it needs to needs to be more foundation to it but that is that women and and maybe girls as young as the girls in our study don't necessarily lose their autism but they're able to mask it or the buzzword is camouflage it and so it's like more and more women or who have autism are thing you know I'm no less autistic but I know I'm not supposed to act like a person with autism so I can i camouflage it and and maybe part of what we're seeing in terms of the decrease in symptoms which again are only judged by this one test in a relatively short period of time is that girls know what are expected of them better than boys that they do it that is absolutely fascinating as is that estimate to to to certain gender stereotypes and as you said how we raise our children that it's some folks feel it's okay for boys to be more stoic that's right that's right exactly yeah yeah we are discussing the latest research on autism and kids our guests today from our world-renowned mind Institute are dr. David Amaral and PhD candidate and graduate researcher a not wise large bar talk if you have any questions please feel free to post them in the comments and we'll do our best to get to them before the end of our discussion dr. Amer all in the study that you did with Anna you do mention camouflaging you just said that sort of the keyword here hiding as a strategy to mask symptoms for those who don't know what kind of camouflaging is this refer to and why do kids feel obligated to do this ain't not let's begin with you um so people with autism might camouflage or mask their symptoms in order to appear more neurotypical because showing autism we're showing autism symptoms might be perceived as being different and being different has many strengths but it also presents challenges at any age I think but especially also for children the problem with camouflage is that it's been shown to come at a cost to the individual so camouflage is a process that a person needs to be constantly in control of the way they present themselves of their behavior and it takes a lot of resources out of a person so it's been shown that people who camouflage across extended periods of time they are told in mental health and and in camouflage has been associated with heightened anxiety levels across pine-sol so people with autism they talk about it as burnout they do this for extended periods of time but after a while it takes a toll on them and that's why you know these things they have they have their advantages and their disadvantages and it's a complex issue I think that's maybe that's why it's a buzz to well it seems like it would certainly take a lot of energy to recognize that your behavior is different and then sort of work hard to present something different to get around it can you give some examples of camouflaging or masking behaviors or what that looks like yeah do you want do that in our head so camouflaging could be in little girls for instance there's a study from UCLA that shows how girls I understand that they're supposed to play with others but if they don't actually want to engage in they're they'll play like on the periphery of the group of the social group so they won't actually appear being alone on the side but they're not really engaged in in the game that everyone is engaged in so that's just one example and and when you look at it from the sidelines where you're looking for it you can start seeing it in girls as behavior or maybe in a conversation you know that you're expected to ask something about the other person so commonly that we are aware of it so you do it in an effortful meaning deliberate way not because of just the inclination that you have in a conversation to follow up on what the person was saying those are just a couple of examples and I think that there's there's sort of two levels of interest here in this this whole topic one is that at this point other than examining the behavior of the person like we did in using viedos it's really hard to tell what level of autism a person has it's it's not like you you can ask you know does this person have an infection and you can look at the bacteria and say okay it's this level and then all of a sudden it goes down to this level so you've reduced your your level of infection how do we say somebody really has changed their level of autism and so Anna and I and others are trying to figure out other ways where we can look at brain function and determine whether there is a biological marker of autism and I you know from a research perspective I think that's interesting because we really are trying to understand the biology of autism which is a function of how the brain is working on the other hand there's a to me it's there's a sociological issue here and that is that that are what our expectations are and I think there you know the feedback that we saw online to this article from people with autism is that it was sort of like duh you know you know we we you know we've been experiencing this and yes we're hiding our autism and you know and it and and if you read you know there was an online website that you know had literally thousands of responses to the article and many of those responses were yes you know and it was not only females that mask I mean it's males with autism as well that that you know know that in order to fit into society they have to act in a certain way they have to act in a sort of certain non-autistic way and to really fit in and and it really comes at a cost that people are stressed out is everything that a not said that they're anxious there's more psychopathology and you know they're you know the real downside is that we know even serious psychopathology and even things like the prevalence of suicide is much higher in people with autism then typically developing people of the same age and you know so I think you know in a sense while we are investigating these symptoms the underlying message is that if society could be more accepting of the behavior of people with autism and the perspectives of people with autism you know then then at least it could bring down the stress level and we could all work together and that's a message you know sometimes these words even when we use the you know the idea of autism severity you know it's it's like you know something's bad about autism and you know we're all about trying to improve the quality of life of people we want to decrease disability and and the kinds of things that we're measuring are things like repetitive behaviors or lack of social interest that I think you know society generally speaking thinks gets in the way of quality of life and those are the kinds of things we'd like to understand and and help eliminate but we're not about eliminating autism per se we you know so I wanted to make that clear and I think it's you know it's an important issue that is getting more and more credibility you know in the field of autism research yes a few sorry that these are merely differences yeah you mentioned something really interesting there that you know that you can't measure this the same way that you measure an infection per se and sort of like quantify the difference because so much of the assessment is sort of observational so that's what it raises the question whether kids are actually getting better or getting better at masking their symptoms dr. ml do you talk about that so this is something that we were really concerned about when we did this study and so first of all you have to know that the people who do the a dose are trained psychologists usually and they've achieved we call it research reliability that means they've gone through extensive training they've worked with somebody who is an expert on this measure and they and they basically graduate at some point to being regarded as somebody who can do this reliably and we're fortunate at the mind Institute that people who were with us at the beginning of the autism Genome Project psychologist Leslie to pray for example are still leading the clinical core at at the mind Institute so they've been with us for the entire project and have been able to guide all of these Assessors so I think it's it's really we've done everything we can to make sure that we are reliable and we're getting accurate data both that when the child is 3 and when the child is is if 6 and Beyond actually these children that are the basis for their study are have come back already when they were 11 or 12 so we have another data point that a nod is analyzing at this point and we're gearing up for them to come back as teenagers as 15 year old so we've seen these children from - all the way up to when they're teenagers and you know again we've tried to make sure that when we measure this it's it's reliable it's the best thing that we can do at this point in time but you know I I think there there is on the horizon some other strategies like looking at how people visualize images on the screen so I'm looking at your face now and I'm paying attention to your your eyes which is a typical thing to do individuals with autism tend not to they'll tend to look off to the side and not make a lot of eye contact well there are new strategies where you don't really you have to instruct people at all you just have them look at a screen and show them various social situations and that's it gives you a measure of the severity of how there are the level of which their brain is is functioning in a different way from a neurotypical person so those things are under eyes and we you know keep saying in just a few years and I've been saying that for the last 10 years but in just a few years I think we'll be having some more of these biologically oriented markers that you know will go hand in hand with the behavioral assessment I mean it won't replace them but it will it will allow you confirm using different strategies inna can you please explain what you found about the relation of IQ measures to changes and symptoms yeah so in in the study we looked at autism symptoms and and other variables developmental characteristics of these kids to try and understand if relationships exist and what we found was that the kids who decreased in their autism severity they had higher IQs initially at age 3 compared to the other kids in the sample and they made gains across early childhood in their IQ and and in contrast we found that the kids who increase they're symptom severity had lower IQs and they were the only group of kids in the study who did not make IQ gains across early childhood so looking at these findings we do think that there's a relationship happening between IQ and symptom severity change across early childhood and that's something that we're continuing to explore now like David said with another time point into middle childhood what would you consider to be the takeaway for concerned parents for parents who you know maybe have read your study or just sort of trying to make heads or tails of it what advice would you have and I'll enjoy both of you to weigh in yeah well so when we started the mind Institute now more than twenty years ago we were started by parents who have children with autism and when when their children were diagnosed every single one of them the parents were told basically by clinicians at that point in time your child has autism you might as well even consider institutionalizing them or you know them a place to live because they're not going to change they're just gonna have autism for the rest of their lives when when we started this study it was motivated by work that's done at the University of Connecticut by a colleague Deborah fine and she published a couple of papers saying that some kids with autism ultimately have what she called optimal outcome and what that means is that they go from having a diagnosis of autism a clear diagnosis of autism to at some point in early childhood to not qualifying any longer for a diagnosis of autism they their behaviors that change so much that they appeared to be moral neurotypical than autistic at that point in time and really we've looked at that in the autism phenom project and there are kids that have achieved optimal outcome it's about 5% of the kids in our autism phenome project but what we realized and they not realized was that beyond just having a change in diagnosis is that there really is a lot of change and this severity as we talked about of autism symptoms and what that means is that between 3 & 6 years of life a lot of kids around 30% of the kids were engaging more in social behavior they were having less repetitive behaviors so living a life that was more involved with their family and able to go to school and things like that so I I think what this study suggests is that that that family that has a child diagnosed with autism doesn't necessarily have to be pessimistic they can be optimistic that their child can actually do well and that we're working hard to try and figure out number one you know what are the markers that let it it would I would love to be able when a child is diagnosed to be able to say okay your child fits into this category and here's what you need to do to optimize their growth and your child or alternatively you know we know that your child is going to have some really strong challenges and here are some other things that you can do to have to overcome those challenges with your child but we can give them advice about how their child is going to turn out if if they proceed we're not there yet but what we see from this study is that there are infinite possibilities for what can happen when you have a diagnosis with autism so I I take this as a very hopeful study showing that there is potential for positive change what do you want parents to know I really David I think that what we found here is that to our surprise things are much more dynamic than we thought they are children can reduce in their in their symptoms and the severity of their symptoms at early ages even from very high initial severity levels at an early age at age three which is a really encouraging thing to know and and and I think it gives also a lot of motivation to professionals the clinicians working with kids that we can see results and on the other hand we see that there's a group of kids who started off with fairly low severity levels but they increased over time the increased Prosser early childhood so that should also be a reminder I think that children need their intervention children need as much support as they can get regardless of what they appeared what their symptoms appear to be at an early age and and that generally things are more than amic than we thought I think that's the take-home message I just checked for a lot against questions it seems that we don't have any at this time so I'll invite both of you to make any closing comments before we go I appreciate the opportunity to talk about this paper the paper is freely available and the link to the paper will be provided and people can download it and read it in its entirety so I would welcome people to take a look yeah I agree with that I think the best thing for us is just for people to read the paper to see the work and and write to us and give us your comments and your thoughts about it and I maybe can say one more thing Pamela and that is that you know with the kovat crisis research at the mind Institute is slowed down considerably we want to make sure that our participants and families who come to - super research are safe and so we won't do anything that would jeopardize their safety but we're hopeful that things will start ramping up in the late summer and early fall and we are recruiting we have beyond the autism genome project we have what's called the Autism Center of Excellence it's a it's a effort that was funded by the National Institute of Health and we will be recruiting young children into that study essentially to do almost exactly what is being done through the autism genome project and we will be recruiting kids who are just diagnosed in the late summer and fall to come join us and to participate in our research program we this is only one of many research programs so I would encourage families to check our website to look for research that that they find interesting and compatible with their family situation and then when it's safe to join us in our research efforts thank you very much dr. Amer all and Amos for being with us today we very much appreciate your time and the great advice that you've shared with our audience thank you thank you and thank you for joining us for this UC Davis health Facebook live if you have more questions please post them in the comments we will get your questions to our experts so they can continue to be answered so we encourage you to share this post if you have family and friends who would enjoy learning from it for up-to-date information on what's going on at the mind Institute go ahead and head to health UC Davis edu slash mind Institute thank you for joining us you

Channel: UC Davis MIND Institute

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Keywords: UC Davis MIND Institute, UC Davis Health System, Autism, Davis Amaral, UC Davis Health

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Length: 34min 52sec (2092 seconds)

Published: Thu Jun 18 2020