SPEAKER 1: Today, one in every 68 children has a diagnosis of autism The spectrum is becoming wider and wider And because of that, there are lots of misunderstandings and misconceptions Some employers are thinking about making accommodations when we talk about autism Some people assume if a kid has autism, he must be having a very high IQ Some parents are feeling like the world is ending when their kids get diagnosed None of these is accurate Today, we are very fortunate to have the director from UW, University of Washington Autism Center, Annette Estes She is a research professor in the Department of Speech and Hearing Services, and an adjunct research professor in the department of psychology at the University of Washington She is also a licensed psychologist in the state of Washington Her research is carried out at the UW Autism Center and the Center on Human Development and Disability Now, let’s welcome Annette [APPLAUSE] ANNETTE ESTES: Thank you so much OK Hi Thank you for coming today So we’re going to spend lunch together, and I’m going to be talking about autism We have time for questions I kind of like taking questions periodically throughout the talk, so I will do my best to remember to do that So, an autism spectrum disorder is a general term that is used to describe a group of complex disorders of brain development When we talk about autism, we’re usually– at this point, we’re thinking about two domains of functioning One of them is social communication The other is restricted and repetitive behaviors or interests And these impact children and adults in a number of different ways So first of all, in the communication domain, we think a lot about language Language development can be delayed Some children never end up functionally being able to communicate But with early intervention, at this point most people can develop the ability to talk A lot of people on the autism spectrum actually have language abilities in the typical range, and it’s more about the non-verbal communication where you see the impairment So for example, gesture use or eye contact or emotional expressions are sometimes lacking in individuals with autism And sometimes, the understanding of those kinds of non-verbal behaviors are lacking With early intervention, many people achieve quite good levels of communication and language development But what you often see is a difficulty integrating the verbal and the non-verbal So even in individuals who have achieved what we would consider typical levels of being able to communicate, sometimes things are a little bit off So maybe you’ll have eye contact without verbal interaction, or vice versa You might see a person talking without making eye contact or using typical gestures So this can impact people in a number of ways The reason that we talk about social communication is it’s really hard to disentangle communication and social ability So, social-emotional reciprocity is another aspect of communication So that social approach, sharing interests, feelings, initiating, responding to social interactions, all of these things can either be diminished in individuals with autism, or sometimes even lacking entirely But again, since we’re talking about a spectrum, it’s not always the case that there’s not an interest in social interaction, but there’s often difficulties in developing or maintaining or understanding relationships And this can come about for a number of reasons So sometimes, it’s adjusting behavior to suit the variety of different social contexts you find yourself in, whether it’s a child on the playground versus at a family reunion versus in a classroom Sometimes, it’s due to the fact that kids aren’t as interested in peers Sometimes it’s interested, but not knowing how to kind of initiate or connect with kids And early on, imaginative play is so important to child development, but also just in terms of what kids do together And this can be a specific area of difficulty for kids on the spectrum So, restrictive and repetitive behaviors are the other circle that we talked about at the beginning

of today And this can kind of manifest itself in a couple different domains So, one of them is in stereotyped or repetitive motor movements This is something that people notice kind of pretty easily So that could be rocking back and forth or flapping your hands if you’re really excited, that kind of thing But it can also be a little in a different domain It can also have to do with repetitive use of objects, or even repetitive speech, so saying the same kinds of things over and over again And you can see in the picture here a little boy who winds up his toys in a specific way from smaller to larger And that’s an example of a repetitive type of use of objects The other dimension of this is insistence on sameness, or inflexible adherence to routines How this might look is a parent bringing their child to school a different way than they normally drive and having that result in a lot of distress for the child That’s not something that, typically, developing kids worry about too much, but a lot of kids on the autism spectrum get thrown off by those type of changes Another dimension is a highly restricted or fixated interest on something So you know, again, this doesn’t have to be an unusual something It can be Magic the Gathering or other things that kids– that a lot of kids that age really love to do But kids on the autism spectrum seem to focus on that exclusively, or with a lot more intensity or focus than other kids their age But it can also be an unusual kind of interest So I’ve had kids that absolutely love refrigerators That’s not a very typical thing, but you know, we have had experts on refrigerators and vacuum cleaners and all sorts of things that are unusual in their focus The other thing that just got added officially to the diagnostic criteria is hyper or hyposensitivity to sensory input So this can be textures or sounds, or even visual kind of interests And the way that this can manifest is anything from having only certain types of clothes that a child wants to wear– I’m seeing some nodding and smiling in here– you know, having to cut tags out or only wear a certain kind of blue jeans, that kind of thing But it can also be just being able to hear things– it doesn’t have to be startling to loud noises, it could actually be hyper-awareness of sort of not very loud noises Like right now, there’s a little bit of a high-pitched sound going on I don’t find it disturbing, but a person with autism might have a really hard time concentrating due to this noise AUDIENCE: It’s a squeaking fan and the AC [INAUDIBLE] ANNETTE ESTES: Squeaking fan and the AC There you go So that can be a problem So the other way– I hope I’m kind of describing how autism is a spectrum But some of the ways that I think it’s easiest to understand this spectrum is to understand that some people, like [INAUDIBLE] already told us, have highly adapted intellectual abilities So, it’s true that some people on the autism spectrum are far above average in terms of intellectual functioning, but a lot of people– but it really spans the whole spectrum, and there are a significant number of individuals with autism that are intellectually disabled, that have a very hard time functioning due to intellectual impairment So that’s, again, one of the myths that– you can understand why, because there are people with autism that are very, very bright, but not everyone has that gift Also, some people have a language impairment, and some people don’t So that’s another kind of way that this manifests as a spectrum One of the most important things is that, to be an autism spectrum disorder, the difficulties have to present early on in development So this is before age three And they also have to cause clinically significant impairment So this is an important point that I’ll sort of pause on for a minute, because if you think about autism, so difficulties with social communication, restricted and repetitive interests, all of us can see some of ourselves in those type of symptoms, I guess, or those kind of characteristics So you know, not all of us are highly social Not all of us always feel like we’re understanding what’s going on in social situations Some of us might be more particular about how things are lined up, or maybe don’t like change very much But to have an autism spectrum disorder, it really has to significantly impair your life It has to be a problem

Whether it’s in school, if you’re a school-aged person, development if you’re a little guy, it has to cause problems And so that’s something to keep in mind, because I think all of us can relate to this on some level So, OK So, all of this that we’ve talked about is reflected in the Diagnostic and Statistical Manual of Mental Disorders This is the– essentially, it’s a book that psychiatrists and psychologists use to diagnose people with all different kinds of psychiatric disorders You can see up here that it started with the DSM-I, and has gone through five iterations now And just to clarify for some of you who’ve known about these kinds of disorders for a while, in the DSM-IV, the previous iteration, we had Autistic Disorder, Asperger’s, Childhood Disintegrative Disorder, Rett’s, and Pervasive Developmental Disorder And all of those are now subsumed under this umbrella of the autism spectrum disorders So if anyone had a diagnosis before that had a different name, now it’s just called something different But it’s still part of the autism spectrum So, any questions about what we just talked about, or comments? That was a very quick Autism 101 Yeah Yes What is– so the question is, if you have an 18-month-old, for example, how do– what do these kinds of things look like? I am so glad you asked that, because my focus of my research and a lot of what we do is focused on the youngest ages, when autism first starts to emerge So hopefully by about the middle of the talk, you’ll know more about the answer to your question than you ever thought you would That would– so we’ll see how that goes So, what’s important about an ASD diagnostic evaluation? So, why do people want to get a label like this? How does it help? So, the first thing is it can be a key to accessing appropriate services Whether it’s medical, psychological, behavioral, educational, all of those things can fall into place much more easily if people know that a person has autism Also, parents get information about the next steps So a good diagnostic evaluation will include recommendations for intervention that are individualized to that person It will also help clarify that person’s individual behavioral and developmental difficulties, but also their strengths I think a lot of times when we do the testing that’s involved, you can really see where a child’s abilities are And that kind of gives you the in you need to start– sort of jumpstart some learning processes And then, in the best of all worlds, parents and caregivers can get support and education about autism So, a lot of people, after they get this diagnosis, find themselves warmly embraced by the autism community And that would be– it’s a really important thing for a lot of people to have that support along the way, and also information from other parents, because that can be really, really helpful So here, I wanted– what I wanted to do next is show you a video This video is of a girl who was evaluated– I think we evaluated her probably 15 years ago, so I don’t think she would be recognizable at this point But also, they did– her family did sign a release of information, so you know it was OK to show this for educational purposes And I wanted to show you this video because this is the typical age at which a child gets their first official diagnosis with autism And this is a girl who I also had a chance to know throughout her childhood all the way up till when she was a teenager And I will just tell you that her last evaluation with me, she knew more words than I did I had to go look up some of the words she was using So she was a kid who was highly capable And here she is at age four And what I’d like you to do is notice the differences in her approach to the situation than you might expect other four-year-olds So if you don’t know about four-year-olds, I’ll clue you in Not surprisingly, I’m going to ask you to look at her social interaction So, she’s in a room with two adults One of them is her mom The other one is an examiner who knows– has just had a really fun time with her for about an hour So a lot of– so these are people who she’s familiar with, and who are fun She also– I also want you to see how often she initiates or responds to social interaction,

what she does when she communicates What is she talking about Is she directing it at people Is it social And also look at what she’s doing with the toys, and see if you can see some of the restricted and repetitive kinds of interests that she shows OK So I imagine that you noticed several things about the social and communication and repetitive behavior domain when you were watching that Does anyone want to make comments or observations about what you saw? So this little girl was not– she was a pleasant person She didn’t cause a lot of problems for the grown-ups in her life, which can sometimes, for kids on the autism spectrum that have not a lot of challenging behaviors, that can actually delay how long it takes them to get identified, because you can imagine that she’s a really nice girl to be around However, part of that was because she wasn’t initiating social interaction like you would expect most four-year-olds would not give you probably 30 seconds in the room without them coming up to you and showing you things, bringing you things, asking you to be on the floor with them She did have communication You heard her say numbers You heard her– I guess that’s probably all you heard in that little clip But she didn’t direct anything to other people in the room And she also, as you noticed, lined up blocks She actually was putting them all with the same thing on the top, the little letters And then she had a ritual that included some repetitive motor mannerisms and a repetitive kind of verbal sounds that she would make So those are the kinds of things that you might see that, again– yeah AUDIENCE: This is what makes it difficult, because– ANNETTE ESTES: Right So the question, to sum it up, is how do you tell whether something’s typical or not typical, because basically kids are quirky people, right? I mean, that’s kind of characteristic of childhood So what makes somebody have autism And a lot of that has to do with having a real sense of typical development So you know, knowing how often you would expect a child with typical development to be initiating social interaction Lining things up specifically isn’t such a bad thing It’s do you do that without any social– without any communication, and do you kind of maybe get distressed if that– if you’re not able to do that Do you have a variety of things you’re doing So these are some of the questions that I think, if people have these questions about their own child or another grandchild, a neighbor, anything like that– I mean, neighbors get a little hard, but if you have worries, you know, feel free to consult– there’s a really good website, First Signs, that has some nice video examples But also, I think coming in for a diagnostic evaluation or a screening is a really good idea There are some things online, too, about that So if anybody has questions, let me know So as [INAUDIBLE] said, one in 68 kids have been– the most recent estimates from the CDC is one in 68 kids have autism in the United States One in 42 boys, and one in 189 girls So not considered an un– it’s considered a common problem at this point When I first started giving these talks, we would say that autism was a rare disorder We don’t say that anymore One of the interesting facts about this more recent CDC study was that the prevalence rates ranged from a low of 175 in Alabama to a high of one in 45 in New Jersey And people have wondered about this I think it’s interesting I can only speculate I am not an epidemiologist But one thing I happen to know is that there are very, very few services in Alabama for any developmental disabilities And New Jersey, on the other hand, charges $1– or gets $1 of every speeding ticket in the state of New Jersey to go towards autism research And that’s just the research piece So they have an amazing kind of comprehensive identification and intervention program in New Jersey So I think that it’s not that people are moving there, it’s that there’s sort of more awareness and that there’s more professional kind of– more professionals that understand autism And also, people– there’s more reason to get a diagnosis So back to the what do you– why would you do this? Well, you would do it if you had good intervention, because otherwise it’s probably not that helpful to come forward Yeah AUDIENCE: It’s always struck me that there’s such a gender divide with this Is there any explanation or musings about why this is? ANNETTE ESTES: There are musings So the question is about why more boys than girls

It’s about three to one boys to girls This is common among a lot of the childhood disorders So, ADHD has a similar kind of prevalence And there’s a lot of people that are interested in this Actually, I’m going back to– I have a couple studies that are funded by the NIH Autism Center of Excellence Studies And one of the [INAUDIBLE] not mine, but another one of the [INAUDIBLE] that was funded is specifically to better understand that question So there’s a lot of speculation, but one of the things is that girls seem to have some sort of protective factors early on So whether it’s something about girls’ brains are more resilient than boys’ brains, it seems like, and we’re trying to understand more about what that is Of course, that kind of switches in puberty, where girls start to have higher rates of anxiety and depression So there’s a lot to understand and unpack there But probably– my best bet would be to look into the biology and the underlying kind of differences in the brain So the question is why do kids get autism and how are they more at risk I will get to that That is good OK But quickly, a couple more facts, and then we’ll get there So co-occurring medical conditions, these can include GI difficulties So a lot of kids having problems with eating and distress due to gut problems Sleep problems and sleep disorders are really common It’s a very difficult thing for the whole family, I think, oftentimes for people with autism And then seizure disorder So about– well, it’s interesting, because there are some kids that get seizures early on, like under age two, that end up with autism But most people with autism that go on to have seizures are teenagers when they are first recognized And so this is something that is important to look out for, if kids start to have sort of staring spells or changes in their functioning That’s one thing that people need to look out for AUDIENCE: And what do you mean by gastrointestinal? Do you mean like things like diarrhea or constipation? ANNETTE ESTES: It can be diarrhea, constipation There’s– some people think that there’s a higher rate of Celiac, so difficulty with gluten, in autism It’s unclear whether that’s truly higher, or if it’s just that it’s harder to recognize it But certainly, there seems to be more reflux Just all sorts of things surrounding the gut Interestingly, the gut and the brain are highly connected early in development Those cells are actually the same cells early on in fetal development And so there may be something around that Then over time, and during school age and into adulthood, there can be a co-occurring psychiatric and developmental disorders in addition to the autism And this is something that, again, this new DSM was good, because it helped us be able to– there was, like, rule-outs that you couldn’t have autism and ADHD Well, that was not really reflecting, I think, the natural history of the disorder, which is that, yes, you can have attention problems Anxiety becomes quite pronounced in a lot of individuals with autism as they get older, like teenage and early adulthood Learning disorders So even when somebody– a learning disorder is when you have typical development, or typical intellectual ability, but you have a specifically hard time with a certain area, like, say, reading or math or spelling Something like that So that can happen at a higher rate in people with autism Actually, we had a study, including a lot of people here in Seattle, that showed 90% of our kids that had an IQ of 70 or above had either an extremely unusually high ability in a certain academic area, more than you’d expect by the IQ, or a really low ability, much lower than you would expect based on their IQ So this poses a lot of challenges in school Intellectual disability is much higher in people with autism, as well as speech and language problems OK So, causes Here’s your slide We have– this is a really– I’m going to give you the complicated answer first, because it is complicated So you know, there’s– we’ll just have to deal with that in autism, I think The causes are probably an interaction between– over the course of early development, between some pretty complex factors So each one of these factors in and of themselves is not simple But the first thing we know is that there’s

a genetic basis to autism We know this from twin studies and family studies, and now we know it because of the increasingly good technology that allows us to be able to really pinpoint very small changes in the genome that are related to autism risk We know that their brain structure can be different in people with autism And I’ll tell you a little more about that We know this through neural imaging studies We also know that brain function, through functional neural imaging studies, can be different And we also think that there’s some prenatal factors that might go into increasing autism And how I think about the prenatal factors are it’s sort of anything that’s bad for the brain probably increases autism risk So for example, there were early studies with thalidomide, which was a substance that parents– or moms took when they were pregnant to help them with nausea And it turned out that it was very bad for babies, and it also increased autism rates So babies that were exposed to thalidomide had higher rates of autism We know this through some studies of viral infections, and people are now looking at all sorts of factors, everything from air pollution to other kind of toxins in the environment These things– so again, anything bad for the brain probably increases autism risk, in conjunction with the genetic factors that I’ll talk about in a minute So once you kind of have a baby with these sort of early signs, these early behavioral deficits probably cause a cascade of developmental problems So if you’re not paying attention to the speech of your– of people around you, then you’re not going to be learning to talk as well, right? And if you’re not sort of more orienting to social interaction, you’re going to miss out on a lot of learning opportunities, because that’s how babies learn So these things kind of set up a developmental cascade that can end up resulting in autism So that’s the answer It’s very complicated One of the things I really want to focus on, though, is the autism genetics So at this point, we understand that the primary cause of autism is genetic However, when you take one step further into what does that mean, you’re back into a very complicated situation, because some of the genetic factors are inherited, some are not inherited They’re de novo mutations The de novo mutations tend to be– they can be very rare They don’t occur in very many people But when they do, they’re very powerful risk factors So these have begun to be identified more and more in the population So it doesn’t affect that many people, but when it does, it’s a really important set of information that you can get from that Most people with autism, it’s more complicated There’s– we used to think that there was going to be five to 10 genes that we would recognize– we would be able to find that accounted for autism Now we’re up to, like, 300, people are thinking So these are mostly common genetic variations that, together, have small effects, and they kind of interact with one another And in different people, and along with other later occurring factors, might lead to autism So any individual may not have an identifiable genetic cause for their autism, but probably about 10% to 20% of people with autism, they’re– at this point, there could be a genetic kind of answer to why they got autism So at this point, we would love to see everybody that has an autism diagnosis get a genetic testing done, just to see if they are among those people with those small rare mutations that might also have some medical follow-up associated with them But again, that’s not going to pay off for everybody But it’s certainly worth it for those people who do have those kind of factors Oh, I see a hand Yes Most of the rarer and the more powerful mutations are not inherited They’re de novo They just arise in the course of early, early genetic– well, when the fetus is being formed, basically And so for the most part, there’s some– there’s some families where there are inherited factors Most of the time, though, those are those common variants

that I was talking about that, if you have five or six of them, you don’t have autism Or if you have– I don’t know the number, because we’re still sort of doing that research, but let’s say that if, in one individual, there were 10 genes that caused their autism, you might have to have nine out of those 10 to increase your risk So these are oftentimes kind of subtle factors that we’re talking about with the inherited forms of autism Now, that’s not the case for some So I guess– just as you say one thing, there’s exceptions like fragile X syndrome, for example, which, in fragile X, you can see pre-mutation carriers that don’t have fragile X, and then, in one generation, it will show up And this can be, you know– so in that case, it is inherited But usually the parents don’t have symptoms that are recognizable So it’s– yes Yeah AUDIENCE: [INAUDIBLE] is there any correlation between siblings’ chances [INAUDIBLE]? ANNETTE ESTES: There are So in the 1990s, Tony Bailey and some others in the UK did some of the first twin studies So they studied monozygotic twins, or identical twins, and the dizygotic twins, or fraternal twins So the monozygotic twins share approximately about 100% of their genes, dizygotic twins about 50% And then they’ve studied sort of like cousins and further out relatives And what they found was exactly what you would expect for a highly genetic disorder So the monozygotic twins had about a 90% concurrence rate And when you got to dizygotic twins, it was about– I’m guess– I forget the– I’m trying to remember the study It was a long time ago But it went way down And then the further out you went, the less concordance you had So the less chance of having both siblings You notice it wasn’t 100%, which is why we are also interested in environmental factors And we also understand now that genetics is not so simple, either With something called methylation, you can change gene expression due to environmental input Anyway, it gets– it really is a fascinating area But it’s not my area, and I realize– I spent about 10 years of my life doing what they would call phenotyping, so doing the diagnostic assessments for families that were participating in our genetic studies, some of the first studies where there were two or more kids with autism in the families And I started to realize that I was never going to be a molecular geneticist, and so I would probably do better as a psychologist, thinking more about the brain And became really fascinated by some of the early studies that our group and others published, because what it appeared was that the genes that we were finding all express themselves in the brain This is not surprising now, but it was pretty neat at the time And so not only are these genes expressed in the brain, but they’re also typically expressed early in development And they’re a lot of times related to neuronal development, or the cells– neurons are the cells in the brain So it’s how those cells proliferate, how they connect to one another, and that kind of thing that seems to be related to the genes that we’re identifying So, this was in 2002 Our group began doing a large-scale study that included multiple views on people with autism, including doing brain imaging studies And these were, at the time, the earliest– we were told, actually, some of the reviews that came back for this grant was, well, you can’t identify autism as early as three to four years old So how are you going to find these kids? But we did And what we found was that the kids with autism had about 10% enlargement in their brain as opposed to typically developing kids And then the kids in the developmentally delayed group without autism actually had smaller brain size So this led us– and other groups replicated this, it became one of the most replicated findings in autism in terms of a biomarker, one of the first So, related to this– oh, yes? So the question is whether developmental delay and autism are the same thing They’re actually not You can have autism and not be delayed in your development, although I guess only on certain measures, because of course by definition you are socially delayed if you have autism But there’s a number of ways that you can have developmental delays that are not autism

I mean, I don’t know how– it’s kind of a complicated thing, but that’s why our psychologists stay in business AUDIENCE: From that graph, it looks like [INAUDIBLE] will never co-exist [INAUDIBLE]– ANNETTE ESTES: You can define it so that they don’t In this case, it was developmental– AUDIENCE: Because you either have a smaller brain or a bigger brain ANNETTE ESTES: Well, it’s– you know, this was– our DD group was 15 kids So you know, I wouldn’t take too much from that The developmental delay group had multiple different reasons for being delayed And it so happened in our group that they had smaller brain size overall You can definitely have autism and developmental delay But in the way we defined it, it was developmental delay without autism AUDIENCE: OK ANNETTE ESTES: Yeah So, OK So back to– so we’re finally getting to your question about when you can diagnose autism So just a quick poll– I don’t know how to do this without making everybody cheat and look around, but that’s OK What do you think the earliest age is to diagnose autism? So how many– raise your hand if you think four I already sort of said we could do that, so I guess I gave that away Three? OK, I said that, too Two? Under one? OK So we have two and under one More people in the two Well, I am going to tell you what I think about this AUDIENCE: [INAUDIBLE] [LAUGHTER] ANNETTE ESTES: I’m trying to make it easier for you guys So yes, there’s no between one and two I’ll have to change that So, let me tell you about some of the earliest signs of autism So between 12– between one and two, what you start to see– and this is based on research that’s both retrospective research, where parents talk to us about what their children were like when they were growing up It’s also based on a new approach that I’ll tell you more about of looking at infants who have older siblings with autism who are known to be at higher risk for developing autism So there’s also prospective studies that look at development in these younger ages And what we find is– you’ll see the word less here in the social domain So less orienting, less looking at– to people when there’s social kind of things going on Less initiating, less sustaining of engagement, less coordinating, fewer gestures Some kids have delayed language milestones, but there’s not a lot of language going on at this age, right? So the bar is fairly low here for everybody And repetitive behavior was thought to not occur at this age, but our group recently did a study that looked prospectively at these infants with older sibs, and found that there really were more subtle forms of repetitive behavior going on at this age Not so much the motor movements or winding things up, because again, these kids are very young, but would tend to focus more on objects, sort of palm them in their hands back and forth, that kind of thing, for a lot longer than you would expect So this was the beginning of repetitive behavior And just to let– for those of you that say how can you tell the difference? I’m going to show you a little video of typically developing babies so that you can kind of get a sense of just how social little guys can be OK Whoops That goes on for a while OK And so you can see that, even before kids learn to talk, they’re doing all sorts of communication They’re sharing enjoyment They’re imitating each other There’s a back and forth to their interactions And so if you’re kind of grounded in typical development and you interact with a little one who’s not showing some of those early emerging skills, you can actually detect differences in some people earlier even than a year And right now, we’re involved with a four-site– it’s actually larger than four-site– four clinical site study, University of Washington, Washington University, Children’s Hospital of Philadelphia, and University of North Carolina And what we’re doing is studying these infants with older siblings with autism And we’re doing brain imaging, as well as behavioral assessment The reason we’re focusing on these infant sibs is that recurrence rate is about 20% So if you have a baby and you have an older sibling with autism, there’s about a 20% chance that that baby’s going to have autism, too In addition to that, there’s a 30% chance, if you don’t have autism, that you might have other learning problems, whether it’s speech and language or specific learning disabilities So the idea here is to assess and monitor infants who are at risk for autism, and understand what’s going on before their symptoms emerge So we’re getting– yeah

Sorry Quick question AUDIENCE: I have a question for that number What is that 20%? Does that mean for autistic child and there’s a 20% chance that his sibling will also have autism? ANNETTE ESTES: The baby will have autism, yeah AUDIENCE: Wow That’s really high rate ANNETTE ESTES: It is a really high rate AUDIENCE: Comparing to one in– ANNETTE ESTES: One in 68 AUDIENCE: 40– 60, yeah ANNETTE ESTES: Yeah Exactly So, that’s right So this is a group that, I would say, needs assessment and monitoring, but also we can learn a lot from So we’re getting babies in at three to six months of age, and then assessing them at 12 and 24, and then again at 36 months with brain imaging and behavioral assessment The brain imaging is done, by the way, asleep, so no sedation So late-night studies, very dedicated families And what we found in our initial study was, at six months of age, you could already tell– see some differences These are assessments that were done by evaluators looking at gross motor at six months Let’s see here So we have six months, 12 months, and 24 months And the red line are kids that went on to develop autism The brownish line is kids that went on to develop a milder form of autism So they had– they were still on the autism spectrum, but their symptoms were milder These are high– and these are both high risk Here’s the high risk infants that did not develop autism And then the blue line is the low risk infants who had older siblings that were typically developing And already at six months, you can see some differences in the groups And those groups’ differences increase over time This is parent report of how the kids were doing at home and in the community And you see the exact same type of pattern With children that go on to develop autism at six months were already lower in their adaptive behavior than high risk infants that had mild symptoms And then– or milder symptoms High risk that went on to not have autism, and then low risk that had no autism So development in infants at high risk for autism in the first year of life, this is something that differs starting as early as six months These differences are mild and subtle They’re not the kinds of things that you would necessarily walk into a clinic and be able to pick out But these symptoms unfold and develop over time, and there’s a convergence between both parents and clinicians So here’s the real answer to your question So it’s a bell-shaped curve when kids actually have the full syndrome of autism There are very rare cases– rarely before eight months, but between 8 and 12 months, you actually do have a very few rare number of babies that will show the full syndrome of autism These symptoms kind of coalesce and emerge, and by 24 months of age, most children who are going to go on to have autism will be able to be identified if they’re seen by a specialist And then some kids, though, don’t really show their full signs until later I would say only very rarely do symptoms occur after age three for the– you know, really the first time And yet, you might notice that the median age of diagnosis in the United States is five years of age So this is our challenge, that we can reliably diagnose autism by 24 months of age Sometimes, before 12 And yet, the average age is four to six years when people are actually getting diagnosed So there’s this gap And the gap is even more painful when you look at that second piece of information there, that usually between the first time a parent brings in a child for an evaluation, there’s another year before they actually get the answer from the professionals that they are seeking So it’s something that parents have called a diagnostic odyssey, going from person to person, doctor to doctor to try to understand what’s going on with their child’s development Yeah AUDIENCE: So on our journey– I could add some color to this– on our journey, we started to realize that our son was autistic when he was two We did a couple of visits to see if we could get confirmation, and when we called for the evaluation, it was May And the next available appointment for an evaluation was February, 10 months later ANNETTE ESTES: Right AUDIENCE: And so once we got to the point that we realized that we needed an evaluation, the soonest we could get one was 10 months later So that’s part of what adds to the [INAUDIBLE] ANNETTE ESTES: Right It’s really a huge challenge

And one of the things that we’re going to try to do is use some of the early brain findings that our group and others, I guess, but it’s really mostly our infant brain imaging study have come up with And this is differences that are present before the symptoms are really clear And you can see these are DTI images, diffusion tensor imaging And they show– the areas that are kind of in brighter, hotter colors are areas where there was higher– something called fractional anisotropy in the children that went on to develop autism, as compared to the kids that didn’t develop autism So the connections between the parts of the brain in infants that go on to develop autism are already different at this early age And there’s a couple other findings that we’re working on publishing right now And what we hope to be able to do is, for parents who– you know, that eventually what we’d be able to do is get something a little cheaper than an MRI to be able to identify differences But once we know kind of what those differences are, then we can maybe work on figuring out who’s at the highest risk so that we can maybe develop preventive interventions, or at least know who to really do some close assessment and monitoring with so that there’s not a 10-month wait for people who are at the highest risk So this is maybe obvious, but what we aim to do is start intervention as soon as possible after autism symptoms emerge, because this leads to the best outcomes We would like to provide intervention and support across the lifespan Usually, people with autism need supports at all different steps along the way Even the people who respond the best to early intervention still can face challenges at all the different developmental points along the way And one thing that we know from our work at UW is that early intervention does improve outcomes We did the very first randomized clinical trial of early intervention, and recently just did a follow-up of that But that first finding was that we could improve IQ actually average of 17 points Some of the kids gained 30 points of IQ during the early intervention Improved communication, reduced diagnostic severity This evidence was really important It might seem obvious to people who’ve gone through it that their kids get better, but having evidence means that insurance companies will pay So it was work that I think has yielded really important gains that way We also just published the first-ever follow-up study that showed that these gains were maintained two years after early intervention This paper was named as one of the most influential papers last year by NIH And again, it seems like a sort of no duh when you look back on it, but nobody had done this before So one of the interesting things is it looked like there was– I know there’s people here that like data, so one of the things I will show you is this is– you can’t see this very well, but here’s the early– this is our intervention group The red is the control group And here, we have 18 months of age A year later, about four years of age And then this is six years of age And what happened is the kids didn’t really differ in their autism severity during the early intervention But two years later, they did So what we think– and but what they did differ on right away was their IQ levels So what seemed to have happened was kids maybe gained the ability to learn from a typical environment They were able to be in typical classrooms, to– you know, we don’t really know what happened exactly, but they had a lot less intervention during those two years after our study than the kids in the control group And their autism symptom severity went down a lot during that time AUDIENCE: Question How early is early intervention? ANNETTE ESTES: Well, these kids entered the study between 18 and 30 months of age And, yeah So, one of the things I want to say is being in the Pacific Northwest is a really– something I don’t take for granted We have– we could never do all this research without a supportive community and supportive families that are amazing that they would do things like stay up half the night with their babies to get a brain imaging study done, or bear with us for– I guess they give two years of a longitudinal study There was a lot of questionnaires and a lot of assessments And it’s pretty neat to be in this region One of the other things that was– that’s been a true pleasure for me is becoming the director of the Autism Center So not only do I do research now, but I get to have a clinic where we can develop clinical services, hopefully that use what we’ve been learning in research for all these years and start to make it–

these state-of-the-art evidence-based clinical services available that we can do research that’s relevant, because we’re kind of in the trenches with people and facing some of the same problems that the families are facing And we also know that we are not alone going to be able to meet the needs that exist in our community, so we do a lot of professional training to increase community knowledge and skills, because that’s how I kind of sleep at night You know, I know we can’t help everybody one person at a time And, let’s see We have just a few minutes I won’t talk too much about our clinical services, just to say that we do have an infant clinic now based on what we learned from our families in the infant brain imaging study People really valued having that assessment and monitoring along the way We have ABA services, social skills groups We want to start this process of being able to be on the playground and using a program called Remaking Recess for kids to be socially included during recess We have a summer camp So we’re working on it And I’m going to skip through all these specifics We also do training I want to invite you all to– invite your teachers, and if you are teachers, come We have a free two-day workshop for educators, two different times One is on transition to adulthood in autism, and another one is for elementary school-aged kids And we have flyers up there So get your teachers to come It’s going to be good And it’s free, because we’re being supported by a community group called the St. Johns Masonic Lodge So they raise money for us to be able to provide this to teachers We had 700 teachers last year And this year, we’re hoping for 1,400 over two days Or two different times So, community support is where it’s at for us We just wanted to put in a plug if you have ideas, energy, entrepreneurial thoughts, financial support, mentorship, or networking, we’re all about that So come and talk with me afterwards Or Jim Boyle, who’s here from the University of Washington He can also tell you more about how to partner And then, stay connected with us This is our website, our newsletter, and our first-ever gala dinner is in September So, that’s it I think we are just on time So, feel free to stay afterwards if you want to talk more, if you have any other questions Thanks [APPLAUSE]