 Good morning. Welcome to KEDA's third annual Summit on Autism. My name is Kristin Coates, and this is Shami Abraham. We're excited to be here with you today. Thank you all for taking time out of your Saturday to be here. We have a very full program this morning, and we're going to try to stick to our schedule as much as possible. We have been so fortunate this year to receive a generous response from a diversity of sponsors including the medical community, academia, private partnerships, and industry. When we look at all of our sponsors, we're very grateful to see such a diversity of input and help. We would like to extend our sincere gratitude to our presenting sponsors, KEDA, the Messiah Foundation, and Pekoko LLC. We would also like to extend our appreciation to our event sponsors, the University of California Irvine, Children's Hospital of Orange County, Bank of America, Bauman and Nilufar Fahimi from Planet Beauty, Robert and Barbara Kleist, Mark and Samira Moshihadi, Lynette and Michael Haid, Paul and Heather Singarela from Latham and Watkins, LLP, the USC Department of Occupational Therapy in conjunction with Western Psych Association, the USC Viterbi School of Engineering, Strattling Yoka Carlson and Ralph, 4 OC Kids in the San Welley Foundation. We would also like to thank our individual contributors, Pamela Miller, Mr. Ali Razi, Riza and Malia Zafari, Dr. and Mrs. Zach Rida, Dr. Richard and Mrs. Kristen Mungo, Dr. and Mrs. Dairush Kaledi, Mr. and Mrs. Richard Rosete, BAS Recycling and Paul Hastings. At this time, we would like to take a moment and recognize a few of our very special guests. If you would like to stand for a moment, we would really appreciate it. Vice Chancellor Dan Aldridge, thank you. Before we commence the program this morning, I wanted to take a moment and thank our wonderful clinical advisory board that you see right there, our fantastic, the energetic parent advisory board that have just been so helpful in getting the summit put together and bringing all of you here today. All our KEDA families for coming and supporting us. We hope that the presentations are both educational and helpful for all the parents and professionals who are attending today. If you have questions for our speakers, please feel free. There are little pieces of note cards that are hanging around that you can submit to intermission and also after that and during panel two, and you can also email your questions from your phone to questions at KEDA.com. Now it is my distinct pleasure to introduce Chancellor Michael Drake. Dr. Drake has been the Chancellor of the University of Irvine since 2005. He has a rich history in both medicine and education. He served as Vice President for Health Affairs in the University of California Office of the President, was involved with countless research initiatives, authored five textbooks and a myriad of other articles, and was part of the faculty and eventually senior associate dean at UC San Francisco School of Medicine for more than two decades. Since becoming Chancellor, Dr. Drake has been involved in the creation of new programs at UCI in disciplines varying from pharmacy, nursing, public health to the institution of California's first public law school in over 40 years. Without further ado, please welcome Chancellor Drake, who will open KEDA's third annual summit. Thank you for the kind introduction. I'm waiting for the day when I get introduced with further ado, but I have to wait for that for a while, I guess. And welcome to all of you who've gotten up on a Saturday morning to come out and listen to today's proceedings. We've been looking forward to this third installation of the KEDA Summit now for for many months and are very excited about the program that's going to happen today. I want to, as I begin, really acknowledge the visionary work of Fairbors, Macy, and and his family for putting together the support for this particular endeavor. Fairbors is one of the university's great friends and in a quiet way supports many of our most innovative and forward-thinking initiatives, and this is but one of many examples, and we appreciate that very much. It's great to have you associated with us. Later on I'll be saying some words about our keynote speaker who, in a similar way, is a great citizen of the broader world, and I will hold those comments for for that time. I would say that one of the things that's a great privilege, and it's the combination of privilege and responsibility for the university, is to be a convener of people to come together to work on the solutions to our most challenging and vexing problems. Particularly as a public university, we have a charter, we have a mission, we have a founding set of principles, and those principles were enumerated in the Morrill Act of 1862, a great piece of legislation that brought together the public university systems that we all are now so used to for the purpose of educating the sons and daughters of the middle class, and for the purpose of creating answers to the problems that we're facing the country and in our world, and one of the things that's really really important about what we do as universities is that we, particularly as public universities, is that we have a responsibility for addressing those things that are the greatest concern to our constituencies. So convening people like yourselves on mornings like this to be able to address those problems is a part of our our central mission, and in an audience like this we will have several types of people. We have faculty and students and staff, but we also have entrepreneurs and thought leaders. We have opinion leaders. We have world citizens, and we have patients and families and other stakeholders. And all of you bring a passion and a perspective and a point of view and an experience that helps us to pull together our best answers to our most vexing problems. At the university, we have four pillars of excellence that we think about a lot, and those pillars of excellence are academic excellence, that which takes place in the classroom, research excellence, and research excellence means the creative excellence of thinking of new solutions to our current problems and looking around the corner to what will be the things that that challenge us in the future. We also care a lot about, particularly in our students, we care a lot about character excellence and developing character excellence, who you are as a person. And then finally, leadership excellence, and that is what you're going to do with what you've learned here. Yesterday, I welcomed about 800 new graduate students on Monday in this room. We'll welcome about 7,000 new freshmen and transfer students. And we're very, very concerned always in every moment about their journey through the educational process and thinking about those four pillars of excellence and how they'll help to guide our pathway, academic excellence, research excellence, character excellence, and leadership excellence. Today, we'll be talking a lot about the research excellence part of this because we'll be thinking of solutions to the problems that challenge us. And there's a great line by Clark Kerr, who was the president of the University of California in the 1960s, and then was a great thought leader for many decades. And after that, giving a wonderful series of lectures on higher education and the uses of the modern university in the world. And he had a line I loved in his book, the book that was published through many, many editions. And he said that knowledge makes the world go round, and the university is the best place for new ideas. And so, as we go on with this morning, what we will hear is many perspectives, many ideas, and many new areas of research that are addressing the vexing problems of autism and neuroscience. When we think about the problems that we address as people, there are two that really strike me as being very difficult to put our minds around. It's difficult, I find, to get my mind around cosmology and the universe, and what that is, and how big it is, and all those kinds of things. So on a grand scale, I think that that's a very difficult thing to understand. Another one that's difficult to understand for me is neuroscience. I mean, the challenge of understanding how our own brains work is really quite a daunting challenge. So one kind of in the far out world, and one then within ourselves. Today we'll be talking a lot about the latter, about neuroscience, and how we deal with the incredible complexities of the human mind and brain. One of the great leaders nationally in this work is Professor Ira Lott. And Professor Lott is one of the people I met when I first arrived at our campus and was introduced to as somebody who was making a real difference in pediatrics and neurology and in neuroscience. And one of the places where he focuses a great deal of attention and energy is on the various issues that we're dealing with today. And so my initial task this morning is to introduce to you Professor Ira Lott, who will get the scientific part of the morning rolling. Thank you all so very much for joining us here at the University of California, Irvine. We appreciate having you here today. We're honored to be able to host former First Lady Rosalind Carter and our wonderful sponsor, Furbores-Mercy, and with no further ado, I would like to bring Dr. Ira Lott to the podium, Dr. Lott. Thank you, Chancellor, and good morning. I want to thank all of you for coming today and giving us your Saturday morning. We're very respectful of your time, so we're going to start and end on time. And I'm grateful to our panel of speakers, each of whom can talk to you for four hours to keep within there a lot of time. So let's get to it. The first speaker on panel one is Professor Wendy Goldberg. She's a professor of psychology, social behavior, and education at UCI. Receives her PhD from the University of Michigan, and she has garnered several prestigious awards, including the Chancellor's Award for Excellence in Undergraduate Research and a Faculty Career Development Award. She's the author of numerous papers and has co-authored a book on peritone. She has developed a regression supplement form in autism, which has been translated into many languages, and she's been working in the area of autism since the mid-1990s. Her topic is Autism, a Family Affair. Professor Goldberg. Thank you, Dr. Lott, and thank you, parents and colleagues who are in the audience here today. I'm going to be speaking to you about autism and the family context of autism. As most of you know, autism spectrum disorders are characterized by neurodevelopmental deficits and are marked by impairments in social interaction and communication and a pattern of restricted behavior and interest. Proposed revisions to the diagnostic criteria will recharacterize the disorder as a dyad of impairments, such that social and communication will be combined into one realm of socio-communication, and the other realm will stay as it is with restricted behaviors and activities. In terms of prevalence, current estimates in the U.S. are that one in 110 individuals are affected by an autism spectrum disorder, which I'll call ASD, but even higher estimates around 2% were found in a recent study in South Korea. Autism spectrum disorders occur in all racial, ethnic, and economic groups and are three to four times more common in boys than girls. Although experts disagree about the causes and meanings of these high rates, they agree that the impact of autism is not just on the child, but on all family members, a family affair. Since the mid-1990s, students in my lab and I have studied children at risk for an ASD and children who have an ASD diagnosis. We study infants through adolescence, using multiple methods and multiple informants. Today I will focus on very new findings about some of the challenges that families face and I will offer some evidence-based solutions to these challenges. The research in my lab is guided by two main theoretical frameworks. One is Bronfenbrenner's social ecological model. And in this model, you'll see the child is depicted in the center here and then around the child are these concentric circles that represent contexts of influence on the child and on the family. And that includes schools, neighborhoods, healthcare, public policies that affect the child and family. Family systems theory reminds us that individuals and relationships in the family are interconnected and interdependent. The double-ended arrows indicate that the child is affected by the relationships in the family and the child in turn affects the well-being of parents, siblings, and other family members. A commonly quoted statistic of an 80% divorce rate among parents of children with ASDs in popular media has not been corroborated by research. Large studies either find no differences in marriage and divorce rates or a much smaller difference. More like 23, 24% in families with a child with an ASD compared to about 13.8% in families with typically developing children. That's the TD up here that you'll see on this slide and others. This particular study done by Hartley and colleagues found developmental differences with divorce rates though staying high as children aged only in the group of parents raising a child. In our research and similar to results from other studies here, we find that among married couples, marital quality is significantly lower in families with an ASD compared to families raising typically developing children. The asterisk that you see here and on other slides indicates that this difference is statistically significant. In multiple parenting realms, we see differences such that self-reported parenting competence, for example, and social support from friends are significantly lower in families with a child with an ASD compared to typical development. But in this slide we see that there are similarities between parents raising children with an ASD and typical development. There are no significant differences between the groups in levels of perceived parenting burden, depressive symptoms, or social support from families in our study. Married or divorced, parents have a relationship around how they come together to raise, take care of, interact with, make decisions regarding their child. This is called the co-parenting relationship. Co-parenting refers to how parents work together as a team. We can see co-parenting during various activities, including play. As you're going to break away from a video clip here and as you watch the video clip, note the sense of warmth in the family triad. All family members enjoying one another. Should we give a shot? No! I don't want a shot. It's on me! Are we chats going to give me? You think I need vaccine? Am I getting vaccinated? What? In our research we find that co-parenting is another challenge area for parents raising a child with an ASD. So we had significantly lower levels of co-parenting among parents raising a child with an ASD compared to typical development. Okay, so now I've outlined some of the challenges. What are some solutions? Well, the effects of co-parenting issues and marital conflict on children depend in part on how the conflict is handled. Research-based solutions indicate that parents should make time to discuss their views about parenting, identify points of agreement and disagreement, and then work through the disagreements through compromise. Try to start off the discussion softly rather than with harsh criticism of the spouse. Parents should understand that there may be different ways of interacting with the child and that each parent makes important contributions. Co-parenting and marital issues are dynamic. They may take one form during infancy, another when the child interacts with peers and attends school, and yet another when hormones kick in and the transitions of adolescence occur. Extending our generational focus, we have begun in our lab to study grandparents. And these are very preliminary findings here that we reported at a conference earlier in the year. And these findings suggest that there may be issues around closeness and discord between adolescents with an ASD and their grandparents and issues around closeness but not discord between mothers and the grandparents. These findings alert us to the importance of gathering different perspectives on the same relationships. A recent large study of grandparents by the Interactive Autism Network found that grandparents report that they provide essential practical emotional and financial support when their grandchild has an ASD. Family Systems Theory informs us that siblings are affected by the time and attention that parents give to a child with special needs and they have their own relationship with the child as well. In our lab, we find that children who are reported to have more severe symptoms have less positive relationships with their siblings, that is less comforting, less affection, less teaching, less sharing, and they spend less time interacting with their siblings on weekdays. Another area where we have examined the role of siblings is in theory of mind. Theory of mind is the ability to infer the mental states of others. Most children with autism spectrum disorder do not show a theory of mind at the usual age, but about 20% do. We have new research just being published this month in developmental science that indicates that regressive autism compared to early onset autism might explain the mixed results. Research with typically developing children indicates that the presence of child-age siblings also might affect the development of a theory of mind. There are a series of tasks that indicate the presence of a theory of mind. Depicted here is one task wherein the study child is shown the inside of a candy tube where something unexpected, a crayon, has been placed. The study child who demonstrates a theory of mind would think that someone who hasn't seen the crayon would think that candy is inside the tube rather than what the study child knows to be in it. In our lab, having siblings is related to better theory of mind performance for children who are typically developing, but not for children with autism spectrum disorder. We are now looking into whether other aspects of the sibling constellation matter such as the gender and age spacing. Some siblings themselves may be on the spectrum which would impact how they interact socially. This risk underscores the need for early identification of the signs and symptoms of ASD. In our lab, we have found that there are barriers to early identification and one of them is the knowledge of the early signs of ASD. Possible solutions include boosting parental knowledge and recognition of early signs. One of the students in my lab, Cara Thorson, is now testing an online early identification training module for parents of infants. Other solutions involve helping parents to get expedited referrals and evaluations and for the parents themselves to keep good records of how their child is progressing. So even though we have a long road ahead of us, I believe that, and there are unmet needs certainly, there are reasons to be optimistic. As a broad field of scientists and practitioners, we are doing a better job of meeting the challenges of early identification, understanding causes, having more effective treatments and interventions, and harnessing more support for families from public and private sectors. Here are just a few examples of support in the local and internet communities. You can also participate in research and we have a table, a UCI table out in the lobby if you'd like to find out more about these studies. And finally, I'd like to thank my support group, my graduate students, Maryam Abdullah, Cara Thorson, Agnes Lee, and Nicole Matthews. Thank you. Thank you, Wendy. Our second speaker and platform one, panel one this morning is Professor Connie Kassari. She's a professor of psychological studies in education and psychiatry at UCLA. She's the principal investigator for the Autism Intervention Research Network for Behavioral Health. She received her PhD from the University of North Carolina at Chapel Hill and was a National Institute of Mental Health Postdoctoral Fellow at the Neurosychiatric Institute at UCLA. She teaches both graduate and undergraduate courses and she's a founding member of the Center for Autism Research and Treatment at UCI and has been involved in autism research for the past 25 years. Her topic is engaging autism, positive effect of family involvement. Professor Kassari. So I was asked to talk about early, well, interventions and the effect on families. So that's what I'm going to do. So as most of you know, it's pretty hard to access services and that can be pretty stressful. Children in early intervention are receiving a lot of hours of intervention and so there's a fair amount of stress about getting those hours. When kids get into school, the focus shifts a little bit and so the oftentimes parents are trying to get social tutoring or academic tutoring. And I want to talk a little bit about family involvement in these programs and what the effects are on families. So there's a lot of pressure, as you know, in early intervention to get hours of intervention. The more hours, the better, right? So up to 40 hours, which is an incredible number, but especially in California, we see this pretty consistently. There's also a lot of pressure to obtain those hours as early as possible. And the focus sometimes is on the type of intervention that you get, that it has to be ABA, discrete trial. And so there's a lot of pressure to get that kind of service. So one of the issues is whether early intervention, and I'm going to really focus more on early intervention trying to follow on Dr. Goldberg's talk. One of the issues is whether or not early interventions either lessen stress or increase stress. So there's really a very small research base on this. There's some evidence that parents who obtain more hours of intervention are less stressed. And the parents are less depressed if they get those hours. But stress will increase if the access is difficult. And as some of you probably are experiencing, you can't always get the services that you want. You know what you need, you know they're out there, but you can't access them. Huge waiting lists, et cetera, et cetera, or they're just too expensive. So it's common for families to actually organize their own therapies and to provide many of those hours themselves. And what we know is that when parents do this, it's a little more stressful, right? So there's a lot more perceived personal strain when you have to provide those hours yourself. There are some other factors that can also contribute to stress. And one is when kids make less progress than hoped for. So parents may be disappointed with their child if they're not making the progress, or they may be disillusioned with the therapy. If so, that might result in some treatment shopping that can be expensive as well. It can also be disruptive. So families, actually we see quite a few families from Orange County that travel up to UCLA. And as most of you know, the 405 is not exactly a non-stressful situation. So, you know, treatment shopping can be pretty disruptive. Another issue is that we don't know how much buy-in or how much you believe in the treatment, and the child's response to a treatment can affect parent well-being. So there's not a huge literature base on this. But those issues around quality of services really continues throughout your child's life. They happen again when you get into school. They happen again when you're trying to get your child adult services. You're always looking for the good teacher, the best teacher. This is regardless of whether you have a child with autism or whether you have any particular child. You're always wanting the good teacher. So that can be stressful. Another issue is that traditionally interventions have focused on academic tasks in early childhood. So colors, naming, sorting, matching. A lot of kids will make a lot of progress in those areas and they make it pretty fast. But not all kids make that progress. Newer interventions have started to talk about and really focus on core deficits. Things about autism that are very specific. So we talk at UCLA about joint attention and play skills and engagement. What that relationship is like for the child with autism and their siblings, their parents, their peers, their grandparents. And that really affects the quality of the interaction. So I'm going to talk a little bit about what we know from our early studies. One is that parents are more stressed when it's harder to engage their child. So it's important to consider how this child relates to other people in their world. And the focus on those core developmental areas related to connectedness and communication are really key. So when I talk about joint attention, I think probably most of you, if you have knowledge about autism, which I'm assuming the audience has that knowledge, know about joint attention. But it really refers to sort of connectedness with other people. It's looking between people and objects. It's pointing to share something. It's showing your schoolwork or showing a toy to your parent. And we've also focused on play skills because play, social play in particular, is a context in which we can develop some of the social communication skills of children. So I'm going to show you a video and I thought that I needed to do something special about these, but we'll try. So this is a little toddler with his mom with a standard set of toys before we started an intervention program with them. And in this toy set are, you know, the toys stay the same. The parent or the child selected the shape sorter. So this shows you what the interaction looked like before treatment. Did I just press? Nope, that didn't work. Okay, so that little guy is playing with a toy. That's what he wants to do. He's very object focused. So this mom and child went through an eight week treatment three times a week. And this is what they look like at the end. Yeah. Good. That was good. He looked so nicely at me. Circle. Circle. Good showing. Oval. Yeah, oval. Oval. Oval. Good showing. Wow. Okay, so the difference here is this is a smart little guy and it's just really a change in the interaction. You know, we wouldn't encourage, but you can see that she's really internalized what he's doing and what we want him to do. She's also happier and less stressed. So improving the relationship between a child and other people in their environment makes a difference in terms of stress and coping. All right, let's see. So what we find from our research with toddlers and preschoolers is that we can increase engagement between the child and their caregiver over a very short period of time in a matter of weeks. And that that engagement continues over a period of time and I'm trying to figure out, there we go. So you can see that it increases over time and that children who are in a wait list waiting to get into the treatment don't change in terms of that engagement. We also know that with preschoolers that that kind of engagement and joint attention actually predicts to language outcomes. So we're trying to get kids to be more communicative. Oops, I didn't mean to do that. So you can see here somewhere, I gotta find it, that these children were children who had very few words to begin with, less than five. And if they were randomized to a joint attention intervention, their language development increased by 13 months and 12 months compared to kids who got just ABA. All of these kids were in 30 hours of ABA. So the content of the interventions actually matters. Focusing on joint attention, joint engagement, especially for kids with few words makes a difference in terms of their development. Okay, so by and however we've noticed from these studies also affects treatment. So stress wasn't related to the treatment as much as how much the parents believed in this treatment. And one issue is whether the strain of meeting appointments for research studies is too much. So as parents are trying to get all of the hours that they feel that they need for their child, then having to make an appointment for research can be a little bit too much. So parents who canceled appointments in that toddler study and took two to three times longer to finish the study instead of the eight weeks, it took them up to some of them five months, had children who were less jointly engaged and who did less well, even though they started off at the same place. So it can be stressful to do interventions as well as hours. However, in this case, the intervention was effective. On the other hand, it may be that the children were progressing more slowly and so that parents lost interest or that just keeping those research appointments was too difficult while maintaining intervention hours. And that's something we're trying to follow up with newer studies. So we've now also done a toddler study where we've done a randomized comparison of a stress reduction education intervention compared to a hands-on parent mediated joint attention intervention. It may be more stressful for parents to actually have to learn to interact with their child in particular ways versus they get the information about services and other aspects of autism that should reduce their stress. We just finished 86 toddlers and their parents. And this study is important because it compared two evidence-based treatments, which should be less stressful because we're offering two effective interventions. Most studies are offering an intervention that's efficacious compared to nothing, weight list or treatment as usual. That can be stressful. Well, interesting. We just looked at these data or analyzed the data a couple of weeks ago and you can see that in both, goodness, I keep doing that. In both treatments, they start off, both parents start off pretty high in terms of their stress reported that's child-related. It goes down significantly after treatment and it continues to decrease. Now all of these children were in early intervention 30 hours a week. Already they're not as stressed because they've got those hours of treatment and all we're doing is adding in this other treatment, either education or hands-on. So for both of those, interestingly, it reduced stress and it continues to reduce after they leave the program. So I think that, you know, we're not looking at families that are not getting anything. These are families who are getting services, start off high in stress and it decreases. So interventions can reduce stress, but it's likely only when treatment hours are sufficient, when treatment seems effective and when families are heard. So when families have a role in the treatment. Expectations for parent involvement need to be reasonable. So parents are parents and they're not therapists. We want parents to generalize interventions from school or from clinic, but it's probably important that they're not providing all those hours themselves. And that professionals communicate with families and I think this is particularly true around school programs. So it's important to have communication aids. I know that in early intervention families often have access to early intervention they can observe. Once children go to school, they're often told they cannot observe their child. We've heard parents complain that the school will tell them that their child acts out when the parent comes so they are not allowed to go to school. If your child is not communicating very much with you, you have no idea what's going on at school. So it's important to have communication aids. So having the school have a way to communicate what's going on at school with parents or with their child to the parent. And hopefully those are mostly the positive things that happen. I know at least when my kids were in school I always wanted to teach you just to say, he's a great kid. We love this kid and not tell me that he did something bad that day. So the communication aids also have to be tailored in a particular way. But that can help parents feel more confident and comfortable and buy in to what's going on at school. So I want to close with just talking, telling you a little bit about the research at UCLA. So we have a lot of studies that are ongoing right now. Some of those are still recruiting for participants. We have studies for infants at risk. The toddler based studies and both of those studies have heavy parent involvement, which makes sense. We have a home based preschool study for underserved families. So these are families who can't really get services and we're trying to go into homes and see those families. And for minimally verbal children. And these are children who are school age. So what happens is that children, the services drop off when kids go to school and aren't actually talking. So we have families that report they can't get speech therapy because their child's not talking. So we have a particular program for those kids. And we have school based social interventions where we're looking at kids who are high functioning in regular elementary schools or classrooms and also playground intervention for paraprofessionals. And we also have a middle and high school social skills group. So lots of opportunities to get involved in research. Thank you. Thank you Connie. It's a pleasure to introduce our next speaker who is among other things a very natural advocate for people with autism. She's a mother of a child with autism and the legal guardian of her brother with autism. Allison Singer has done some very special work. She's the co-founder and president of the Autism Science Foundation which is a not-for-profit organization that funds autism research. Increases awareness of autistic spectrum disorder. And a particular interest to me, a foundation that funds pre and postdoctoral students at a critical stage in their career. This student is working with an NIH mentored colleague. Funds are provided to stimulate an interest in autism and in part this is where the next generation of autism researchers are going to come from. Since 2007 Ms. Singer has served on the National Interagency Autism Coordinating Committee. Charged with writing a strategic plan to guide federal funding for autism research. She graduated magna cum laude from Yale University and has an MBA from Harvard Business School. Allison Singer. I want to thank the sponsors and everyone who put this summit together today from the key to foundation. I think it's so important to talk about what our experience is as parents. Because I know when my daughter was diagnosed with autism, even though I had been in the autism community all my life because of my brother, I still felt very alone and I think there is still a tendency for us to feel when our children are diagnosed that it's happening uniquely to us. And there is really great comfort to be found from understanding that as parents of children with autism we really are all in this together. And while we were asked today to talk about focus on the stress in our lives, I want to also say that with having a child with autism comes great joy. Because I think as parents, as our children make progress, we really appreciate every small gain and every milestone in a way that we may not have been tuned in to appreciate in the absence of that diagnosis. So while I'm going to talk about stress a little bit more from the parent's point of view, I just want to point out that there is a flip side to the stress that we find in our lives as well. So I'm not sure why my slides are not coming up. So as Dr. Goldberg spoke a little bit about, one of the reasons we're here today and why we're hearing so much more about autism is because so many more children are being diagnosed today. One in 110 children are being diagnosed, which means that every 18 minutes in this country alone another child is diagnosed with autism. The good news is that the federal government and state and local governments are stepping up and recognizing that we need to make sure that there are services and supports in place to support our family members. And also that research has to be done so that we can understand not only what's causing autism but develop appropriate evidence-based treatments. Sometimes as parents when we hear about research, we have a tendency to just I think feel a little bit overwhelmed with regard to graphs and charts and understanding exactly what is the statistical significance of a particular treatment versus another one. But really when we think about research, we're really thinking about clinicians and parents, scientists and family members working together with children to try to secure the best outcomes. And I love this picture in particular. This is Dr. Ami Klin from the Yale Child Study Center. I think this picture in particular really illustrates what families go through where we want this type of relationship between our child and the clinician. But if you can see up in the right hand corner, there's the mom who was participating. And when I asked if I could have permission to use this photo, she said, absolutely show my adorable child. But I look so exhausted and stressed out, make sure you cut me out of it. So as we heard today, autism really affects the entire family. It's not only the child who experiences the diagnosis. The marriage is affected by the diagnosis. Certainly siblings are affected innately. And also I think as parents we worry about our other children because so much of our time and attention is devoted to our child with autism. That there's that additional guilt of not having enough time to spend with our typically developing children. We heard a little bit about the impact on parents. We heard a little bit about depression. And also really just the exhaustion that I think we all experience because of our try anything attitude and our determination to do everything possible in our power as parents to help our children. There's also a huge financial impact to having a child diagnosed with autism. In most states, the majority of states, there is no insurance coverage for therapies associated with autism. Now here in California you have an insurance bill that's now on the governor's desk. That's wonderful. And hopefully there won't be challenges from insurance companies once that bill is passed. And you'll have access to insurance coverage for medically sound evidence-based treatments. But there's also in addition to needing insurance coverage just at the time that bills are piling up medical bills and therapy bills and all of the toys that we need to buy to use in those 30 to 40 hours of therapy. Oftentimes one parent, usually the mom has to quit her job to become the de facto case manager for her child. So again just as the time that the bills are mounting there's a loss of income to the family. When we look at the family we know that parents of children with autism have a tremendous amount of stress. We know in fact that they have more stress not only than parents of typically developing children but in general more stress than parents who have children with other types of disabilities. And as we heard a little bit earlier that stress is more related to the core deficits of autism as opposed to some of the cognitive deficits that we would see with other disabilities. We also have learned through scientific studies that the stress is related to the children's sleep problems. This is certainly a great source of my personal stress in that my daughter sleeps maybe three or four hours a night and she can function fine on three or four hours a night. But I can't. And there's also studies that look at stress from parents who have difficulty sort of coming to a resolution that this is true, that the diagnosis is correct, that the diagnosis is real, and that this is going to be part of their family's experience for pretty much the rest of their lives. So I wanted to talk a little bit about some research that we have from the parent's point of view. The studies we heard earlier were more rigorous, randomized controlled trials studies looking at parents of children with autism versus parents of typically developing children. When I'm going to talk about our data from the interactive autism network, which is really a survey of families who have children with autism. It may be a little bit less scientifically rigorous because this is an opt-in database where parents of children with autism decide whether or not they want to participate. But it's still very interesting data nonetheless. And the first piece of interesting data is the number of mothers who participated who chose to participate versus the number of fathers. There are many fathers that I see in the room here today and I applaud you because typically a lot of the parenting responsibility falls on the mother. So it is really wonderful to see fathers here and I hope you will encourage your husbands and co-parents to also participate in these studies as well. So the first source of stress that families report is based on their child's behavior. So 72% of the families who participated describe their child's behavior as a major source of stress. And the more extreme the behaviors that the child exhibited or the more unpredictable the behavior, the tougher the challenge. And many parents specifically said that meltdowns and aggression were the most challenging piece because it required the parents to be hyper-vigilant with regard to their child's behavior. And it made it just very difficult for them to even take their child out in public because of this fear of meltdown. So in fact what we saw was many parents reporting that it's just easier to stay home or easier to leave my child with autism at home because that way they felt less stress. They didn't have to worry about these meltdowns. Parents also cited rude comments made by others when they took their children out in public as a major source of stress. And I can tell you that is in fact for me a huge source of stress. I do not need to be told by someone in the supermarket to control my child as if there were anything that I could do to control my child's behavior. The second major source of stress they reported was exhaustion and I totally get that. 48% of parents who participated reported that their child's sleep habits were a major source of stress. We know that kids with autism have unusual sleep patterns. They sleep very little or they sleep at strange times of the day. They wake during the middle of the night. They have broken sleep and this results in the parents' sleep being a very poor quality. I know it's almost impossible for me to sleep when my daughter is not asleep because I worry about her leaving the house, wandering away. We didn't ask in this study about wandering behavior but we know that 50% of children with autism wander away from their home or from other safe environments. So how as a parent can we actually get good quality sleep when we're worried that our child might wake up, leave the house and God forbid be run over by a car? Parents also reported a lot of stress as we heard earlier around getting treatments. 70% reported that it was very difficult for them to find treatments and that they spent a lot of their time organizing therapy, finding therapists, hiring therapists, paying the therapists, getting the toys that the therapists they are required, organizing medications, organizing doctors visits, fighting with the insurance companies. I mean this all is finding a school, worrying about being called into the principal's office when your child misbehaves at school. So this is all associated with getting treatments. And then when a treatment that you were expecting to work doesn't work, there's also stress associated with the disappointment there. And 46% of the parents who participated in the study said that they felt very stressed when treatments that they expected to work, that they had been told by a doctor would work, didn't in fact work. They felt cheated of time, they felt cheated of money. Parents also talked about the fact that they experienced huge stress when friends or family members criticized the fact that their children were not making progress. And I think a lot of this stems from what we've seen in the media where there are celebrities who go on television and say, I cured my child through this intervention or I cured my child through this intervention. When the scientific studies shows that those interventions are unlikely to work and so when real parents try to use those interventions and they don't work, they often get feedback from the community that well you must not be doing it properly or if you were really a good mother, your child would be better. Autism, I think as we all know, is two steps forward, one step back. All kids with autism seem to experience setbacks where a skill that they have learned disappears or a bad behavior that we thought had been extinguished suddenly reappears or a child who had not previously experienced seizures all of a sudden starts to have seizures. And we also hear about a worsening of symptoms at the time of adolescence but over 70% of the parents who participated in the study reported extreme stress around these setbacks. Many described it as a reemergence of the grief that they felt at the initial diagnosis. They thought we were over this and now we're back to this and that that was a tremendous source of stress for them. And then finally parents spoke about tremendous stress about their child's future. I don't know any parent of a child with autism who isn't worried about the future. What happens when I die? What happens when I'm no longer here? When I know everything that my child needs, I know what she's saying even though she's not actually saying something and no one will ever love her at that level. Who will take care of her? Who will love her? Will she ever be able to have a job? Will she end up in an institution if something happens to me? That is a tremendous source of stress and if you can see here there was no one in the study who actually said they're not stressed about their child's future. So what is it that we need as families? You know we're hearing a lot about oh my god we're all stressed and I don't want people to go home from this conference and say well they told us we're really stressed out. Which we know. So what is it that we need? We need a much more compassionate community. You know it's 2011, it's almost 2012. I don't want to go into the supermarket anymore or go to the mall anymore and have someone tell me that my child is not welcome. Or tell me that I need to control my child or that I could control my child if I were a better parent. So we need much more awareness and we've certainly seen an increase in awareness about autism. But we have not really seen an increase in compassion and that's really where the next step has to be with regard to awareness. Certainly we need insurance coverage. It is crazy for families to have to mortgage their house because they can't afford their child's therapy. So we have started to make good progress with this in terms of getting states to require insurance companies to cover medically necessary treatments but we still have a long way to go. And I know that Mrs. Carter is going to speak a little bit more about parody and coverage so I'll leave that to her. We need more professionals. We need more therapists. When Dr. Castro was talking earlier about weight list, weight list drives me crazy. There shouldn't be a weight list. No one should have to wait for treatment. That was a tremendous source of stress for me as a parent to see weight list. We should have enough trained therapists that no one should have to wait because we know that the sooner we intervene the better for the child. We certainly need more research. We know that we need to understand what causes autism so that we can develop better treatments. We need to know which treatments are most effective for children who show different types of symptoms. And we need to have a better understanding of the research that's being done because so much good research is actually being done now. And as parents we need to become more aware of that research so that it's not just sitting in the laboratory but it's actually out in the field where it can help our children. So when our foundation, the Autism Science Foundation, looks at research, we really look at building the evidence base by funding research that's actionable for parents. We want to understand how we can best support caregiving, how we can support families so that they can be the best providers of care for their children. We want to understand what the best practices are for delivering services to the entire family, the child with autism and the extended family. We want to understand specifically what causes autism, what are the underlying biological mechanisms of action that are taking place in the brain that are causing these behaviors to emerge. Because when we understand that we can be more scientific in our approach to therapy. It's not so much, well you can try giving your child some Prozac and maybe it'll work, maybe it won't. You know my daughter's not a guinea pig, she deserves to have treatments that have the weight of science behind them, not we'll try this and if it doesn't work you can try this. She deserves better than that and all of our children deserve better than that. And we also need to fund studies that are looking at which treatments work and which treatments don't work. And sometimes funding studies that look at what doesn't work are just as important. And the reason we as an organization like these studies is because whatever the outcome, if a treatment is shown yes it does work or no it doesn't work, both of those pieces of data are actionable for families. Because sometimes in the absence of a study looking at a treatment we'll say well no studies have been done so as a parent I'll try it, maybe it'll work. So we really need to focus on those studies that are looking at treatments. With regard to treatments the good news is that we do have some good evidence-based interventions that we know are efficacious for children with autism. And we heard a little bit about those earlier, applied behavior analysis therapy, not just discreet trial training anymore but pivotal response, relationship development intervention, all of the treatments that are based on the principles of applied behavior analysis. Also speech therapy, occupational therapy, physical therapy, social skills training, there's good evidence now looking at these. And the good news is that there's a building evidence base for interventions for younger and younger children. A study came out earlier this year looking at an evidence-based treatment for one-year-old children. And we are funding a study now that's looking at building an evidence base of a treatment for a nine-month-old baby. So that no parent will ever hear the words from a doctor again, which I think are criminal, which is we think your child might be at risk for autism, but there's nothing we can do yet. There are also a lot of non-evidence-based therapy, many of which you'll hear about in the media. And some of these we've now subjected to the rigors of randomized clinical trials and we've proven that there. So I know at this point when people start laughing where they are on the list. So a lot of these we have now tried to see if they are efficacious and we have learned that they're not. And some of these are music therapy, you know, swimming with the dolphins. Some of these you just want to say to yourself, how is swimming with the dolphins going to affect my child's brain-based behavior? So, you know, if it doesn't make sense, we've looked at different vitamin supplements. We've shown that they really make no difference. Secretin injections. Secretin is a pig-based hormone. This was a therapy several years ago that parents said my child had this injection of secretin and he started speaking immediately afterwards. So there was this rush of parents who were trying to get these $1,000 per shot injections of secretin for their children. When we subjected secretin to randomized controlled trial, what we saw was that the kids who were on the placebo actually did better than the kids who were on the secretin. So now we don't hear so much about secretin, but you do hear about other therapies. And you'll often hear from, I'll just say it, from quacks who are putting forth these therapies, that they don't have the time to subject this treatment to the rigors of a controlled trial. Because it's so wonderful that they can't even conceive of the thought of depriving children of this therapy. Now if you hear that I don't have time for a randomized trial, that's one to run away from fast. So we hear about chelation, hyperbaric oxygen, medical marijuana. Now I will tell you, I could get into medical marijuana if it was for the mom. And a colleague of mine came back from a conference, an autism conference, with an actual bottle of snake oil. And he was told that if he put this snake oil in his daughter's bathtub that the negative ions would somehow be leached out of her body and she would recover from autism. One of my favorites actually got left off this list, it's giant electromagnets. This was one that was offered to me when I was in the early stages of dealing with my daughter's diagnosis. One doctor told me that if I purchased a giant electromagnet and put it under her mattress that during the night the magnet would reorganize the ions in her brain and she would learn how to speak. And by the way he sold the magnets. When we talk about treatments, in fact in the Ian survey parents listed 381 different treatments that they were trying for their children with autism. I spent a lot of time in this field, I would be hard pressed to list 381 treatments. The average number of treatments that children were on at any one point was about five. But there was actually one child who was on 56 concurrent treatments. When someone made this slide for me you'll see the little box that they put up here that says this graph extends out to 56 simultaneous treatments we had to cut it off. I actually left that because I thought that was very illustrative. So why is it that parents continue to use these treatments even in the absence of evidence, either in the absence or in the presence of information showing that these treatments are non-efficacious? We really started to look at this because we want to understand some of the anecdotes that we hear from families where parents will swear up and down that they tried this treatment and it worked. Or that they gave their child a B12 injection and the next day he spoke. One explanation for this is that autism is a developmental disability and that children are going to make progress even in the absence of treatment the way all children make progress. If you think of a typical child, one day that child is crawling and one day that child stands up and takes his first step. And it has nothing to do with what he ate for breakfast that morning. It has to do with the fact that at that particular day he was developmentally ready. And it's the same with our children. They will make improvements, they will make gains and skills and it's almost impossible to predict the days that they will make it. But if that day happens to coincide with the day that we've started a new treatment or stopped a treatment it's our natural tendency to try to assign causality. And again in my own experience many times when I've thought about trying a new treatment, am I out of time? Okay, sorry. So let me just show that these are some data from Brian King at the University of Washington in Seattle starting to understand the very large placebo response that we see in trials of children with autism. And I think this is starting to help us understand the anecdotes that we hear in the media. Which is when we start a treatment we don't do it thinking, we don't think like scientists when we start a treatment for our child. We start a treatment with the expectation that it's going to work and that our child is going to benefit. Otherwise why would we bother? Why would we put our child through that and the whole family through it? So the expectation is that there's going to be positive benefit. And so when we're starting a new treatment we look at our child more closely. We tend to ascribe any change to the new treatment. We pay a little bit more attention to our child because we're wondering. And I think that's really starting to help us understand the sources of these anecdotes that we're hearing in the media of I gave my child this vitamin or these fatty acids and the next day he was able to speak. So let me skip ahead a little bit and say that our foundation is really committed to raising funds so that we can build the evidence base so that as parents we're not subjecting our children to being guinea pigs and subjecting them to untested untried treatments. So we raise funds, we support research directly as we heard earlier. We try to publicize and disseminate great research so that families can benefit from the research that's being done. Again it doesn't do families any good if that information stays in the lab we have to get it out to events just like this one. And that's really again why this summit is so important because it's taking that important data and getting it in the hands of families. We try to support families directly by helping them understand which interventions have evidence behind them and which don't. We try to bring scientists and families together because there's so much that we have to learn from each other. And just as an organization we were founded on that principle that families and scientists are all in this together. So if you wanted to get more information about our foundation we have a tremendous social media presence now most of which I don't understand but people say it's good. So I would encourage you to look at our website, our blog, our Facebook, our Twitter and particularly our YouTube page where we do one-on-one video interviews with the scientists who are actually conducting the studies. And we ask them why is your research valuable to families? And interestingly so many of them say well no one ever asked me that before but that's really where the focus has to be. It has to be what's best for our family members and our children. And I know I'm now standing in the way of Mrs. Carter speaking and everyone came to hear her so I myself am looking forward to hearing from Mrs. Carter so thank you again to everyone who organized this summit today. Thank you Allison for that interesting perspective. It's now my pleasure to welcome Chancellor Drake back to the podium who will introduce our keynote speaker. Thank you very much Dr. Lott and we'll say for President Singer's talk one thing she said that I think I mentioned a lot to patients that I was treating in the past years is there was a placebo phenomenon on difficult diseases was really a very difficult one to manage. And I thought of the old adage that I remember as a child growing up there were rain dances and people praying for rain and I remember once someone said we're going to either pray for rain or pray until rain. And the pray until rain phenomenon is one I think to be quite thoughtful of and I think that again as President Singer is speaking that's an interesting thing that we have a tendency to ascribe changes that happen after we've done something to be the cause related to what we've done it's a very difficult thing to look at in chronic processes. So I thought that was a very good point among many others. It is now my great privilege though to be able to introduce our keynote speaker this morning. There are a few people who really deserve the title of World Citizen people who by the things they do in their lives and the kind of the way they leave their lives every day said great examples for us all. I had actually a privilege of introducing one such person in such terms up here in this room about four years ago that was President Carter who came to speak with us and we are still benefiting from things that changed in our campus environment after those comments. And today I get to introduce the better half which is a great privilege. I'm moving up in life my status has improved. Let me say that Rosalind Carter is someone who's very well known to us all. She's had an exemplary career and really made a change in the world. She's had many many titles many many things that she's done in the 1980s. She was the honorary chair of the president's commission on mental health. This has been a passion of hers for many many decades and she's focused the attention of the nation and the world on mental health problems and mental health issues and the social stigma that surrounds them and the issues that we've had with getting proper and appropriate care. And it's been something that has changed the way that we address these issues in our daily lives and the way that our country addresses these issues as well. I'd say that I mentioned a bit earlier that we have four pillars of excellence that we try to follow and try to help train our students for. And we have a series of values that we try to use in directing the students toward those pillars of excellence. The values are respect, intellectual curiosity, commitment or passion to the task, integrity, the trustworthiness or honesty that you use to carry out your life with on a daily basis, empathy and compassion. You're real caring for other people in the way that they can feel that. And appreciation of the circumstances that other people find themselves in and the ability to do this and be a person who enjoys fun and enjoys living life. And I mentioned those values to you because actually I can think of no one who those values describe more appropriately than Mrs. Carter, a person who really has changed the world that she lives in. We speak also, as I did earlier today, of character excellence and leadership excellence. And if you're somebody who embodies character and leadership excellence, then you have a life that looks like that of Rosalind Carter. She's the author of three books, one of which she'll be signing later on today. And let me say that it's my great privilege and pleasure to be able to bring to you former First Lady Rosalind Carter. Thank you very much, Chancellor Drake. And I'm very pleased to be with you this morning and before I begin my remarks that I was asked to make, I have an announcement that I am really excited about. The Rosalind Carter Institute, which I will talk about this morning, has just partnered with UCI in an Administration on Aging Grant to increase the understanding of and collaboration between the Caregiving Field and the Elder Abuse Prevention Network. And so I'm going to be working with you for the next three years. I'm so excited about that. Well, I want to say from the beginning that I thought I would be totally out of my element this morning, never having worked in the field of autism. But I've done so much reading and studying in preparation for this visit. And I found that we have much in common and much to learn from each other. This morning I've learned more about autism spectrum disorders and heard from researchers doing wonderful work. Heard from Allison that I have gotten to know in another organization and I just love her. Well, I have worked in the mental health field for more than 40 years. My experience is not from research. Some of the things that I'm saying are some of the things that I've learned since I knew I was going to talk about autism. But most of it comes from my experiences in the mental health field and the caregiving field. But I began working on mental health issues in 1971 when Jimmy became governor. That is a very long time ago. And although there's some disagreement in the scientific and consumer communities about whether autism spectrum disorders should be classified as mental illnesses or as developmental disabilities, in both instances people experience many of the same problems. Isolation, hopelessness, and I could go on. What I think is the biggest barrier, what I know is the biggest barrier to care in the mental health field is stigma. And you in the autism spectrum field understand the effects of discriminations and stigma also. There are so many similarities in our efforts. As advocates and families we all strive for available and quality community based services for effective treatments, peer support services, housing and employment opportunities and I could keep talking about that. But I became involved in mental health issues by accident. Campaigning for my husband for governor. Little did I know when I began campaigning that it could be a life changing experience even when you lose. And we lost that first elation and that's not fun. Not ever fun to lose. But by the time that campaign was over I had learned so much about people living with mental illness and how they and their families suffered. It was a time when the Community Mental Health Centers Act had been passed and people were being moved out of institutions. Those huge big institutions into the community before there were any services there. And every day in that campaign every day I was approached by people in desperate need who asked me what my husband would do about a son or daughter, other family member who was in our big central state hospital. And I got so concerned about it that I thought if Jimmy wins this election I'm going to do something about that. Well looking back how naive I was 40 years later with still so much that needs to be done. But when he was elected four days later he appointed the governor's commission to improve services to mentally and emotionally handicapped individuals in our state. And I served as a member of that commission and that was the beginning of my education about the issues of mental health and mental illness. And then when we got to the White House Jimmy signed the first month he was president. He signed an executive order establishing the President's Commission on Mental Health. And I am very proud of the accomplishments of the President's Commission. We studied all the major issues in the field, the problems made a series of important recommendations. Even got a bill put together from the recommendations and passed it, the Mental Health Systems Act of 1980. We passed it and funded it. Jimmy signed it in October of 1980. In November of 1980 Jimmy was as he says often involuntarily retired from the White House and we went home. And the next president abandoned my legislation. It was one of the greatest disappointments of my life. It wasn't a perfect bill but it would have dramatically improved community-based care. It took me a long time to get over that. And when we first came home I thought my work on mental health issues were over. But that didn't happen. I learned one thing that has helped me through all I've done. A former First Lady still has influence and has the resources. The best thing about Jimmy being president is people answer my telephone calls. And I can call most anybody and it is so wonderful. It's a great place to be. Experts. Throughout my years as an advocate for mental health I have been touched by stories of incredible hope, have grieved over so many of despair and anguish. I have spoken to people with the most determined spirits. And I have witnessed a dramatic evolution in the field of mental health and treatment of mental disorders. Through research and our new knowledge of the brain we have more effective treatments and we also have learned that recovery is possible. This is something I never dreamed of and would happen in my lifetime. That individuals with serious mental illnesses can be diagnosed, treated and go on to live healthy and productive lives as contributing members in their own communities. Well this should be a time of great promise and hope. And yet far too many of our citizens, far far too many, it remains a time of despair. Public attitudes about mental illness have changed too little over the last 40 years. And with all our new knowledge there's still so much that needs to be done before those living with serious mental illnesses can realize what science has deemed possible for them. The other issue I have worked on for years is one that both the mental health and autism spectrum disorders community share and that is caregiving. When we first came home from the White House our local state university, Georgia Southwestern in our county seat 10 miles from my home had a small endowment for a mental health program. And by the time I decided to do something with them we got home in 81 and there was a lot to do. And so it was 1987 before I said that I could do something with them. And by that time I had a really good mental health program at the Carter Center. I didn't want to replicate it so we began working with those caring for people, with those who were caring for people with mental illnesses. When someone in the family develops a mental illness the whole family is affected. Doesn't that sound familiar? So we actually the Board of Regents established the Rosalind Carter Institute for Caregiving at Georgia Southwestern and we began working with those families but we quickly expanded our work to include families caring for others, those with not only mental disabilities but any kind of physical disability, frail, elderly, Alzheimer's and dementia patients. I'm sure that some of the families involved in our early work were caring for children with autism. We just didn't know it then. We, the mental health and autism field, can benefit from sharing information about meeting the needs of family caregivers. Last week I had a conversation with a mother who has three children, ages three, five and seven, all girls. Her story will sound familiar to you. The oldest child lives with autism. She's very intelligent, reading at grade level, well above her years. However, her communication with others is limited. Recently her home routine was disturbed and some of the toys in the toy room were moved. She now refuses to enter that room in the house and will scream if encouraged to go in that direction. The mother told me that either she or her husband tried to remain at home with the child all the time and their teachers. And they worked really hard to rotate their teaching load to accommodate their daughter's constant need for continuity and routine. Even a subtle change of being exposed to a new caregiver can upset her and then the whole house gets into an uproar. This is but one story in a course of many caregivers who share similar experiences. Caring for anyone with a handicap. Caring for a child with autism can be physically and emotionally draining as you have heard. The burden and stress can be overwhelming and the economic pressure can be enormous. One parent shared with me, I feel as if I'm drowning financially. Parents and other family members can feel lonely, frustrated, guilty, exhausted. Many suffer from burnout and don't know where to turn for help. Today the Rosalind Carter Institute continues to provide important support to family caregivers in Georgia and around the country. In our own state we've created care nets, caregiver networks, and we bring together in an area. And we have a 12 AOA, so in aging districts in Georgia, and we have care nets in every district. And we bring together family and professional caregivers, providers, federal and state officials from the agencies like Wellfans. They've never talked to each other before. Advocacy organizations, the religious community, we always have a business person to keep. We sure we don't spend too much money. And they come together on a regular basis to figure out better ways to support family caregivers. And I went to a meeting Monday of the directors of all 12 of those care nets. And they have families, they have good many families of autistic family members in that network. With funds from the administration on aging, we are teaching family members more effective skills to manage loved ones struggling with dementia and Alzheimer's disease. For over 10 years we've worked in partnership with Johnson & Johnson and communities all across the country, identifying model programs, evidence based programs. And we have a list on our website of evidence based programs to provide assistance to family caregivers. Many of the problems that we've identified through our work at RCI are similar to the problems faced by many of you in this room. I know that for those of you caring for a loved one with autism, the absence of the long term supports is a major issue. Lack of solutions and resources to deal with the day to day challenges is constant pressure and concerns about the future are prominent. When we started the Rosalind Carter Institute, we had students go with family caregivers to call own family caregivers and then they went with a professional caregivers to call owner. We went to the home of a woman who had a severely mental ill son and she cried because she didn't know what was going to happen to him when she was gone. I listened to Allison talk and we heard a lot of the same things that she was saying when we did that survey in-sense. My most important message to you who are caregivers, from my experience of over 24 years and even 40 years because I had a lot of experiences with families of those living with mental illnesses too. But in the face of all of these stresses and challenges is you must take care of yourself. If you don't take care of yourself, the quality of care that you can give to the one you're caring for is diminished. The Rosalind Carter Institute has a number of resources on its website to help family caregivers with some of the issues faced by families caring for a child or adult with autism are certainly unique. And while each individual with this disorder has to deal with specific weaknesses and strengths, there are some common techniques to relieve caregiver burden that can be helpful to caregivers across the lifespan. Just one little program that has been really effective and we've been sharing this all across the country. And many churches and religious institutions are ordering from us to show to their people in their congregations and civic clubs ordering it. We can guarantee that we'll relieve stress. We've just been doing it so long. The endless amounts of love, support, care and hope that you provide to your family member with autism can take a significant physical and emotionally toll. Yet to offer the best or your loved one you must stay strong and healthy and I've heard you to do so. There are lots of things you can do. Find an outlet, a hobby, gardening, exercise, keep your sense of humor, reach out to other caregivers, take a break and don't feel guilty. I wrote a book in the late 1990s and when I went on that tour I told everybody not to feel guilty. I've been a caregiver. In my childhood my father died when I was 13. My grandmother died the next year. My grandfather came to live with us and lived to be 95. And Jimmy's whole family died in the 19, his mother, his father had already passed away. His mother died, his three siblings all died in the 1980s. And I then was a caregiver for my mother and I traveled and that was very hard. I was guilty all the time. Every time I came home and went to see her she said, where are you going next time as soon as I walked in the room? And I felt so guilty and I told on that book tour I said, do not feel guilty. You deserve some time of your own. Caregivers forget that and I know how easy it is to try to find time to take care of yourself but it is so important and don't feel guilty. The numbers of children being diagnosed with autism spectrum disorders is increasing. You've already heard this this morning. While some of this may be due in part to better detection and diagnostic methods the numbers still sobering. Unfortunately even with the recent advancements in detecting the genetic environmental components of autism scientists still do not understand the true roots of these disorders and I think you already all know that. This Kids Institute for Development and Advancement Kitter Summit serves as a very important role in increasing awareness of the disorder. Knowledge is power and by empowering ourselves with research and facts we can ensure that erroneous information does not do additional harm. Some of you may know that I founded every child by two with my friend Betty Bumpers, wife of Senator Dale Bumpers. Our husbands were governors at the same time and we would go to governor's conferences and all the spouses were wives back then and we would get together and talk about what we were doing. I got her interested in mental health and she got me interested in immunization. We worked together for more than 20 and this was beginning more than 20 years ago. It's a non-profit organization that seeks to ensure all children receive critical vaccines to protect against potentially deadly childhood diseases by the age of two. I have been deeply troubled by the false information being widely disseminated over the past few years linking autism and childhood vaccines. Multiple studies over two dozen of them in different countries in the world, many European countries in our country and others covering every variable. Combination vaccines like MMR, the number of vaccines have shown no relationship between vaccines and autism. I ask you to help me spread this life-saving message because so many people are not getting their children immunized. There are hotspots in our country and an epidemic could start anytime. One person just died in California of pertussis because he had not been immunized. That is to me unforgivable not to have children immunized and protected from these life-saving diseases by threatening diseases. When I first started working in the middle health field the concept of recovery was not even discussed. Today I count among my many friends a person who spent eight years in and out of hospital suffering from bipolar depression and now directs a nationally recognized peer support program. He began the first peer support program in our state and then he got Medicaid to pay consumers to work with consumers and it is remarkable what happens. A husband and a father who suffered a major psychotic break in college and is now running a successful consulting firm and an artist. This is one of my favorite people who overcame serious depression and whose paintings now hang in the Carter Center and I sold in galleries in Atlanta for $5,000 a piece. He gave us a painting auction off at one of our Carter Center winter weekends which we have every year to raise money for the Carter Center and we have an auction the last night. And one night, well the first started he was selling his paintings for $50 and we got $300 the first night and then we got $7,000 one night. I wish you could have seen him. He just, well, recover is real. People with mental illness can and do live normal lives. While the understanding of causes and treatments of autism spectrum disorders lags behind that of mental illness. There are many important advances made have been in recent years. Scientific research as scientific research progresses and new discoveries are made. I'm confident that the concept of recovery can be real for individuals with autism as well. While there is still no clearly defined path to the use of medications or other treatments for the various forms of autism. We have learned much about how to help individuals achieve lives of purpose and fulfillment. Today we look at people's strengths and capabilities not the limitations and restrictions. We've witnessed the power of community based local care and the positive impact of giving each individual the opportunity to be a contributing member of society. In my recent book within our reach I shared that hope is the most important human emotion that was denied to individuals with mental illnesses and their families. Today we have brought hope to millions who struggle with serious mental illnesses. I believe that with new cutting edge treatments being developed for autism spectrum disorders and with a better knowledge about how to effectively support individuals with autism and their families. In their own communities we can bring hope to you and your loved ones as well. Well that's where I had ended my remarks and after that I called a man his name is John Husband to thank him for a contribution to my mental health program. And in the conversation he knew nothing about that I was coming here or nothing about the Rosalind Carter Institute. He said Mrs. Carter I have a son living with autism. Well of course that led to a long conversation with him and he directed me to his website in which he has five speeches. And I read these words they were so beautiful I thought I would read them to you. And so he began saying our responsibility is to presume confidence in the child and then go looking for it. If you're a powder tell your child what's going on in the family in the world all the interesting stuff that you would share with another child. Hold up your end of the conversation even if they don't hold up theirs. Explain why you want them to do one thing and not something else. Read words spell them type them sound them out teach them even without needing a test at the end. That challenges in responding not in understanding. So assume that they understand that they appreciate that they love why we keep looking for ways for their mouths and their hands to tell us. And then love them back not for who they might have been without autism or for who they might be if they were cured. But it's people who need to do nothing other than who they are to be loved and accepted and seen as competent. Because when we do that we open the door for them to share a meaningful life with us without having to take an admission test. We start seeing the gifts of people with autism not the limitations. We start to think less in terms of disability and more in terms of humanity and not least. We sometimes find that the things we like most about ourselves are there because a person with autism is there. Thank you madam first lady for the privilege of hearing those remarks. We have received a few questions for Mrs. Carter and they're going to be asked by Dr. Maria Mignon. Dr. Mignon is the chief medical officer and the director of research at Chalk Children's. She's been a friend and advocate for children for many decades. In 2007 she was appointed by Governor Schwarzenegger to the California first five commission. She was one of the founding presidents of the chapter four of the American Academy of Pediatrics. One of the nation's most vigorous chapters. She's worked with Ronald McDonald House. She's been on the board of director for Latino health access. So Maria it's a pleasure to have you here. And thank you again Mrs. Carter for your wonderful remarks. We had had several questions and some of them you had already touched upon but I will go over because I think that they are here. Your commitment to mental health issues as you said go back to the year your husband became governor of Georgia 1971. That was a year I was actually applying to medical school. With all the very worthy causes like I'm knocking on the door of every first lady. Why did you devote time to this particular issue the mental health issue. Well I said I was campaigning and every day I had met people as I said who asked me what my husband would do. And so one morning I was in Atlanta standing at a cotton mill at 4 30 in the morning to meet a shift change. I mean we worked hard in that campaign. And then at a shift change is a really good time because people coming off from work and others going on you get to see a lot of people. Well I've been standing there while and this little woman came out of the door by herself. She was the first one out and she came walking to me. She had left all over. She had worked all night long and I said I hope you're going home and get some sleep. And she said I hope I am too. And she told me that she had a mentally ill daughter and that her husband sorry did not make ends meet for them to take care of the daughter. So she worked at night while he was at home and she took care of the child in the day while he worked. Well I thought about that woman all day and I was came out. This was a hurried up campaign. Our leading Democratic candidate had a heart attack and nobody would run against this other man who was popular. But Jimmy decided that he would run. It was a big segregationist and Jimmy didn't want him to be governor but he did become governor. But anyway we worked hard just driving from one place to another. I'd never done that. And so I drove into this town one day and found out Jimmy was going to be that night was a disorganized campaign. And I heard he was coming to this big rally and it was a big rally because it was a pretty close selection. And so I got in the back. He didn't know I was there. I got in line and we and as people came around Jimmy was speaking to them and sometimes receiving lines are part of my life. And sometimes you will be talking to somebody and reach for the other hand before you know. And he did that to me. So when he pulled me in front of me he said what are you doing here. And I said I came to see what you're going to do for people with mental illness when you're governor of Georgia. And he said we're going to have the best program in the country and I'm going to put you in charge. Well of course he didn't put me in charge of it because I didn't know anything about the issue but then he did appoint the governor's commission. So that's how I got involved. Well I'm so glad that you were there. Oh many people know that we made a lot of progress in the stigmatizing mental health concerns. Do you share that view. Well I work a lot with Columbia University and Columbia University and Indiana University did a poll of research to find whether stigma was decreasing or not. And what they learned was that for depression and the stigma is going is an anxiety disorder. Stigma is lessing a little. For schizophrenia it's going backwards. And we're trying to figure out why and what they believe is that the whole mental health community has always tried to educate people and let them know that mental illnesses are illnesses like any other. If your heart has problems you go to the doctor and you get help. And you do with any illness if you the brain is the same. If you have a brain disorder you should go to the doctor. And the reason I'm saying this is because so many people do not go for help because they don't want to be identified as mentally ill. But anyway and we think that what happens we think that it's stigma is holding it back is the fear factor. And when people learn that somebody has a brain disorder they're just afraid of it. So I do think it's lifting a little bit on some of the mental illnesses but not on the various severe ones. Thank you. 40 years later how much progress do you think that we have made. And in what areas has the process been the most significant in your. Well we now realize that mental illnesses are developmental illnesses. And that's really new. And the earlier just as with autism the earliest you can determine the illness. The better chance you have of sometimes even not having a problem developed but certainly in diminishing the effect of it. And so that is a lot but a stigma it's just a stigma we still have a lot of work to do. We still have a lot of work to do. Absolutely. So what do you think that has in what area has been the most too far and satisfactory. So I think the stigma. The other thing is that well stigma holds back. It's the greatest barrier but it curtailes funding for programs too. And that's bad. It's so hard to raise money for mental programs for mental illness but stigma is the greatest barrier as I said in my remarks. So do you think that that's what requires the most urgent attention funding. Absolutely. And I think now mental health programs are the last to get. I always said when Jim was governor that everything else in the health field is cared for before you get any funding for mental health issues. And it's always been that way and the stigma has kind of kept it that way. But even though we've done we have all of this new research. There's still people like my friend who has mental illness who has been to NIH three times suffers from depression. She's a husband she's my friend I call on all the time a husband call me one night this week and had to take her back to the hospital so people don't see the recovery. Absolutely. And so that to get the message out and to get the mental health community. I think it is beginning a little bit to shift toward recovery rather than as all as we are people always used to do go and the doctor says child has a mental illness just be prepared for it and they come out hopeless. We're giving them hope now and I think that's moving in that direction and with more community sites we need. Absolutely. We know that your great efforts to have parity and insurance in the mental health field and we recently had some legislation in California that we hope will be effective. Can you please provide us some insight on where you stand on this debate. Well in 1978 when I had a president's commission on mental health we call for parity insurance. And it was nine until 2008 I think when the parity bill was passed. But I am so upset about it because the temporary leg regulation temporary regulations came out in February 2010. They have not been enforced and we're trying to get the final regulations. They the White House is holding them back. And I think they're trying to put them in with a health care bill which and get into all of that controversy. The bill is already passed and we cannot get the final resolution regulations passed. And I am really distressed about it and I hope the Californians work better than what we've got now. Well I'm just I'm just very upset about it. Well certainly I think that with individuals like yourself will move this legislation forward. Well there were several questions about autism and vaccines and as a pediatrician I want to applaud you for the comments that you had made. Because those of us who are working in a children's hospital we see these children dying from pertussis or measles where we can be vaccinated. And vaccines won't help. You're not to have autism. It won't affect it at all whether you have or don't have autism and yet it will affect the other illnesses. And I think there are another reason people they don't see the diseases now like they used to. There was a child that came into California and she went on her family on a trip overseas and she came back home to California with measles. She didn't know it. She and seven different people took measles and went in different directions and that can when people are not immunized that can be life threatening. Certainly is. Well you mentioned hope and hope is such an important part of our parents lives through their challenges of getting service for their child and stress involved in day to day life. Hope that something will be effective. It's really what keeps them moving with what they are going through. As you look forward in the mental health arena what do you find to be the most hopeful with mental health in the mental health area. What do you find to be the most hopeful. Well I think I think now that we know recovery is possible. As I said we can move the mental health field and it's moving. It'll take a long time moving toward giving families hope when they come in with somebody diagnosed with a mental illness. Consumers have played an incredible part in this. In 1978 when I had my mental health commission Judith Chamberlain wrote a book on our own. She's had a bad experience with a traditional mental health system and she thought consumers ought to have some say about their treatment. And so she developed this little following. The person that I talked about who did the peer support program was one of them and I have a mental health task force person who was one of them. And they started just meeting together and helping each other. And so how effective that could be. And it just gives hope to people with mental illness. I'm taking this person that I just told you it's in the hospital my friend. And the peer support program has now developed wellness centers. People with mental illness died 25 years earlier than people without mental illnesses. They don't take care of themselves much of the time. And so the peer support program has now started wellness centers and they will keep a person for seven days. And they do this cognitive behavioral health therapy. But it's not called that. And they've talked to them about getting rid of your bad thoughts and loving yourself. And so it's the same thing. But they don't call it that. And it is so effective. Thank you. We had a lot of questions. I do want to finish with one very short question. And it's from a high school student. So I thought that we're talking about hope and they use this in the hope. So how can high school and college clubs contribute to the cost of mental health or autism other than donating money and helping at events. I think that so many people are afraid to say that they have a mental illness because of the stigma. And I think if you can help. If there's anybody that you know that has a mental illness just let them people with mental illnesses have hopes and feelings and dreams just like everybody else. They're not always having an episode. They're just like we are and treat them that way and let them know it and that you that you want to be that friend. Don't be afraid of them. I think that one thing but the other thing that I would say for young women and young men is to go into the field work and study and go into the field. We need psychiatric nurses. We need child psychologists and psychologists. There's such a great need in the field. Just begin to look at it and think about it. And when you just maybe get to know somebody who has a mental illness. If you don't it to me I can't understand stigma because every single family in this country is touched by it. If not a family close family member than a close friend. And so just if you get to know them treat them like you would anybody else. I'll make a difference in their life because they face so much stigma. Thank you so much Mrs. Carter for inviting us. Nice to see you all back after the break. So the second panel really goes in a new direction and a cutting edge direction. It's really an exploration of how technology is going to impact children with autism and their families. Our first speaker is Dr. Howard Shane. Dr. Howard Shane who is associate professor of otolaryngology at Harvard Medical School. And he's the director of the Center for Communication Enhancement as well as the Autism Language Program at Children's Hospital Boston. He's designed more than a dozen computer applications holds two patents. He's received honors of association distinction. He's a fellow of the American Speech and Hearing Association and is primarily trained as a speech therapist. He's the recipient of the Goldison Award for innovations in technology for the United Cerebral Palsy Association and started his work in fact in children with cerebral palsy. So Dr. Shane is going to talk to us about aligning the features of assistive technology with the characteristics of autism. Howard. Thank you very much. I can't tell you what a pleasure it is to be here at this summit. My talk today will be mentioning many assistive technologies but my focus will be on the newer mobile technologies, the iPad, the eye touches. It certainly has considerable interest these days. I just want to acknowledge some support that we receive at our center from a number of sources. It was in January of 2010 when it was pointed out that the Apple tablet is still unseen and therefore it's perfect. Since then, Gravity Tank actually suggested that the iPad is going to be as significant as the birth of the web during the mid-1990s. That's quite a statement to be made. All I need to do is tap. These are some headlines from some online papers. Tapping this app gives special needs, uses a voice. Treating autism, there's an app for that. For autistic kids, eye devices are life changers. Four ways iPads are changing the lives of people with disabilities. L.A. Times, iPad cures the common cold. It wins the Emmy. Creates a million jobs. And it wins Iowa and it's on to New Hampshire. I know that there's tremendous enthusiasm about this technology but let's look at it systematically. Let's see what it really can do for people. Just recently, I found just this week, a study backs the iPad for students with disability. We're starting to study the real effects of the iPad. Obviously that's important. And perhaps this is a recent paper on visual processing. It talks about the visual processing strengths that individuals with autism have. And maybe that begins to explain the interest in the iPad but also their interest in technology in general. I call your attention to a white paper that we created recently. I'm part of a network, the RERC, Rehabilitation Engineering Research Center on Communication Enhancement. And we just completed this white paper on mobile devices and communication apps. And I call your attention to it. You can Google it. I think it'd be worth your reading. We just recently published a study from my colleagues at Children's Hospital on using a clinical approach to answer what communication apps should we use. And I think that that's terribly important. I think it's a mistake for us to just be trying apps rather than trying to have a systematic way of trying to assess their effectiveness. And I think that the need to clinically assess a person's abilities and match that to what the apps offer is very important. This is the part of our Lacey Technology Lab at Children's Hospital. And you'll see many of the popular, we have all of the popular communication devices, including the iPads and the eye touches. But again, in making selections for what's the appropriate technology requires a systematic assessment, a process that we started talking about in the early 90s. We talk about it as known as feature matching. A few years ago we published a study in Journal of Autism and Developmental Disorders on looking, it was a survey of the interest of individuals with autism and their interest in electronic media. Television screens, video, computers, games and so forth. Interestingly, maybe not surprising for many of you that electronic media for most was the preferred form of entertainment. We had many of the subjects of this study. They spend more time with electronic media with all other forms of play combined. I think that's just an overwhelming important finding. There was a preference for animation, no surprise. Winnie the Pooh being the most popular, by the way. But for our purposes, it really gives us a direction for the use of electronic media. If we already have something that's so attractive, is there something we can use, can we use this to then improve our instructional capability? And if I had four or five hours, I could give you all the details about this, but I truly believe it's dramatic. We're also seeing the rejection of the old. Here's a parent that wanted to know on a PTG alert, what do I do with my old Dynavox? I'm ready for the iPad. And here is another, from USA today, they're basically saying we're going to eliminate the eight to ten thousand dollar systems in light of the new iPads. The Gravity Tank talked about the iPads and the apps as a Swiss Army knife. And here we have some things that we all want to flashlight, we want to read, we want to take pictures, we want a thesaurus, we want a clock, we want a level, a telephone, a dictionary and so forth. Well, the first page on my iPad, I can do many of those things and many of you can do the same. The idea is to think about just how powerful this kind of technology is. Here is a subfolder and here I have a level, I have a flashlight and I have a pedometer. So it is going to change the way we think about things. It is a paradigm shift. Let's talk about mobile, handheld mobile devices. Aligning with characteristics of autism. I'm going to be moving back and forth between my slides and my iPad to do a few things. But we know that individuals, children with autism have difficulty with focus and attention. And just some little things that we can do. So for example, hopefully we get this now. Yes. I just go to the camera and focus and attention. Now I'm going to show you a lot of features that are just inherent to the iPad and how we can use it without any special apps. This just comes with the iPad. Helping with attention, and it's rather interesting to watch this when we see children in the clinic with autism, suggesting I want you to focus on the glass or the microphone. Or the flag or our distinguished speaker and so forth. It really is rather dramatic how we can use those kinds of capability to improve attention and focus and take advantage of it. We also find that individuals with autism tend to have difficulties with poor orientation skills. And there's traditional video modeling where a video clip can demonstrate appropriate behavior. And there's a tremendous body of research now to show the power of that kind of capability. We've been doing a project on what we call two-way video modeling. At one point a few years ago we had a $15,000 system to do what I can now do with Skype. In other words, I can get the child's attention through by Skyping with them and ask them to conduct certain tasks. And we find that there are certain tasks that can be completed better when the child is more focused on the video screen than live imitation. Here's an example of some imitation. I'll let it go for just a minute because it's just unbelievable what this youngster is capable of doing. Social interaction deficits. Skype is very, very useful. I had a family in two weeks ago. The mother was concerned. This is off the social interaction. But her son was going to a home, a group residence. He was 23. And the idea that when we talked about using her iPad or computer to be able to Skype with him to have contact with him was very important for her. Email. I've been having children email me for years, children that come to the clinic. We also find that children with autism, especially those with more moderate to severe autism have considerable difficulty with spoken language comprehension. Yet they have the strong visual processing skills that I mentioned earlier. We use a system, and I can't go into all the details, but we use something called scene cues, both dynamic, static, and elements of language. And a scene cue is basically a video clip providing instruction. So here's an example of hanging up your coat or throwing something in the trash. Many children with autism tend to do well with nouns, but they have difficulty with prepositions. They have difficulty with verbs. Let me give you an example. This is a young lady who's part of a field study, an ongoing field study where we are working with her parents in the school. Everyone that touches her life are using these dynamic cues, but I'm able to do it now in the field because of the power of this kind of technology. So we ask her to hang up her hat. She picks up her hat because she does do well with the noun itself. She's somewhat echolalic. We demonstrate what she needs to do. She repeats it, and she does it. Another example is putting her lunch in a noisy classroom. But again, I have immediate access to the technology now. It's just in time, and it goes in the backpack. I'll skip this. Now I'm going to show you a static scene cue. I'm going to skip the static. That's just a photo and not a dynamic scene. I'm going to show you elements where there's two parts of the language. We move from the dynamic to the static to the elements, which is basically, in this case, green plus socks. Asking her orally to get the green socks. Emily shows her. You notice it's green plus sock, and she gets it. It's really quite traumatic, and we now have a very powerful tool to be able to do these things. We can teach some of the social pragmatic deficits just in time. His, Peter, part of a program of a research project in the Boston Public Schools was learning to just say thank you when he receives his tray. We did this in the cafeteria at school. He watches the video. The model, this is the video modeling I mentioned. She says thank you. Thank you. He now is able to carry out many of the social pragmatic greetings, partings, saying thank you, and so forth. That plug is not working. Sergio? I just got an error message. I'm going to be glusing my power. I am plugged in, but this plug is not working. Behavior control and aggression problems. We have a great deal of luck using first then displays, where we visually show what happens first, what happens next. Countdown boards so we know exactly how many of trials. One is it needs to engage into complete social stories. There are many apps that do this. I won't go through them all. There's a timer for 499, first then displays, iPromps. This is part of a program that we've developed where we have the first and then, but we also incorporate timers and trials. Anything we do in life is either you do it for a period of time or you do a certain number of trials. To incorporate this into the child's activity makes a dramatic difference in behavior control. They know it gives them a better sense of understanding. Here's the first, next, and then. Children of the autism tend to have deficits and temporal understanding, so giving them visual schedules and activities. That's nothing new for many of you, but the idea that we can do it in the field and do it easily and do it inexpensively. iPromps is an example. Step Stones is another. This is one of part of the project that I was talking about where we have our daily schedule, but then I can move to show within that particular activity, I can lay out the sequence of activities that's part of that routine. We don't need to use special applications. We can do it with iPhoto. Here's an example. Just go back to my album. I'll pick up. I have one just called Making a Cup of Coffee, and I can just go through the steps. And this is just using iPhoto, creating folder structures that then load it onto your iTouch or your iPhone or your iPad. Get the cup, get the spoon, pour, stir. So the idea is that, again, there are many features that are inherent to the device that allows you to be able to do this. Now, there's also many attractive ways of providing rewards, games, video, music, personally attractive apps that are inherent. And to be able to provide reward with something as engaging as an iPad or an iTouch can make a considerable difference in a child's daily life. I'll show you some examples of these a little bit later. Communication deficits, language arts. There are hundreds of apps now that allow you to work specifically on language arts. I'm going to show you an example of that when I go back to the iPad. Well, maybe it's time to show you some that we use for children who are reluctant to speak. I think you'll find these rather interesting. Here's a program called Singing Fingers. It's a free app. Hello. So it basically records. And again, it's very engaging for the children. Kitta is a great conference. Again, I can engage a child. I can elicit speech in ways that I usually can't do despite my enormously interesting personality. And there's talking Carl. How you doing, Carl? I'm just tickling him. So the idea that I, again, I'm using, whoop, I'm going to turn you off buddy. The idea that I can use this to bring out speech in ways because of the attractiveness of the media itself. Some language arts. I'm going to skip these today. I mentioned Arnie the Trick Goldfish. I can teach language concepts like I'm just going to move my hand across, make him stop. I can make him go. I'm moving my hand up. I can provide food. I can tell him to eat. And I can then design communication displays that coincide with the activities on the iPad. So again, I'm increasing my therapeutic power. I can also teach many other capabilities such as roll. So I make him go and then I have him roll. Let's try that again. Roll. There he goes. So again, it's incredibly engaging. Now, there are many first generation apps. What I call first generation apps. These are applications that have been created. And they're in many ways just duplications of communication applications that were developed in the past. The pro low queue everyone hears about. Look to learn. I converse. My talk, talk assist. There's many, many of these and I'm not going to go through them. But again, these are just duplicating what we've done in the past. There's a next generation coming. There's the ability to take advantage of the features of this technology. GPS functionality. I walk into a room. The iPad knows where I am. The vocabulary that's relevant to that individual is immediately present. We have a prototype of a program called Symbol Talk. And Symbol Talk is using three features which we think are unique and important. First of all, it's voice driven. Imagine being in the field and I want to say to the child, put the paper in the basket. Well, I have to go flipping through my cards or I have to find the picture. But what if I can just say put the paper in the basket and it appears on my screen and I can then see it. So it's just voice driven. It's more like the way we often and usually communicate. Imagine not one iPad or I touch, but imagine two. So imagine that I as the instructor create the message and then say and send it to your iPad. So now I am communicating with you and it's comprehension and it's so important to teach children on the spectrum. And the last part of the Symbol Talk, it has another new feature that I don't think exists in current is what we call the smart ask feature. If I ask the question, where's dad? If I program in advance the places that he might likely be. Dunkin Donuts work wherever you can make that up. It will bring that up on its own. So it works out of like this. We ask the question. Finn pushes the cart. Finn is a character in a software program we have called Putting Stone Place. So this appears on the mentors of device. We see Finn the character. We see the graphic for push. We even animate some of those graphics and he pushes the cart. He transmitted it. It goes to the learner's device. They see it. And of course they understand. The last thing I'll do my running. Okay, then let me show you this. I don't know if I'm going to be able to get in this room that Arnie still here. I see. This is our Symbol Talk. And you remember I mentioned that we have, there we go. I mentioned we have static scenes. We have dynamic scenes and we have the elements of language. So if the child is functioning at a level where they understand a static scene, which is a solitary static picture, that's the level that I'll be retrieving information from my library. If they're at the dynamic scene level, then I'd be at the dynamic scene level. And if they're using language elements like in green socks, I'd be at the language elements. So let's try static scenes and let's try eat, fall down. So the idea is that I'm going to be able to then put the language together using voice. Once I've received it, I can then send it and it's now on its way to the learner's device and out comes fall down. So what I tried to share with you today is that we have a tremendous opportunity that we now have because of the advent of the new technologies. If we had an entire day, we would spend time talking about big technology and small technology, the smart boards, the smart tables. All these are having such a profound influence on our learning. And then we have these mobile technologies that have so many inherent features that we can become so creative in creating apps that will give us tremendously new power that we never had before. So I'm going to stop there, but just be sure to think systematically. Don't just go out and buy apps and introduce them. Think about what are the child's needs and how can I create apps that are going to enable that child to most optimally benefit from the technologies. Thank you. So our second speaker for panel two is Matthew Goodwin. He's had extensive experience developing, deploying and evaluating innovative technologies for behavioral assessment. He's the director of the clinical research unit at the MIT Media Lab. And he is the associate director of research at the Groton Center and Institute for Autism Spectrum Disorders in Providence, Rhode Island. He's served on numerous national boards and he is heading up a large group of interdisciplinary scientists in the area of communication. So Dr. Goodwin. Thank you very much. Thank you for coming in on a Saturday. Thank you Dr. Masi for this invitation and Madam First Lady, I was very touched by your remarks and I wish you well in your endeavors. It's going to benefit us all. So I'd like to share some of the work we've been doing trying to combine the efforts of behavioral and clinical psychologists with computer scientists. You've heard some of this today. I wanted to show you a number because you've heard about the cost. Some of the estimates are 3.2 million over the lifetime for an individual and this translates to 35 billion a year just in the United States alone for the entire cohort of individuals with autism in the United States. So this is a very costly disorder. We do not understand what's causing it. We have some ideas about a gene environment interaction but what the genes are and what in the environment is triggering that is not known yet. And 1% of the population is having to deal with this and I actually think that the numbers could in fact be higher than that. And so you see these steep curves of an increase in this prevalence. This is not going to slow down anytime soon. And I think something that we should always be mindful of is there are always going to be more individuals who require our understanding and support than those who have the expertise to help them. So a lot of what drives the work that I do is trying to think about doing science in natural environments and do it by treating, by supporting, by providing tools to help paraprofessionals, parents and teachers and other in the community to assist these individuals. It's the only way that we're going to be able as a society to keep up with the demands that our kids and young adults are faced with. So I'm an experimental psychologist by training and I got very interested after about 15 years of working at the Groton Center. We see about 1,000 families a year and we are primarily working with those who are more severely involved. So they have very limited verbal abilities. They may have issues with cognitive deficit and a number of other challenging behaviors that make it very difficult for them to stay in mainstream settings. And I, through the influence of the Groton, got very interested in stress and anxiety as a disorganizing factor in which you can complicate learning and coping and self-control in individuals with autism. And I found very quickly that the psychological way of doing research in a laboratory, and what actually Yuri Bronfman-Brenner mentioned earlier today, had a great maxim that developmental psychology is taking people into strange places with strange people for ill-defined periods of time showing them things that they've never seen before. And then, lo and behold, what we find in the lab doesn't necessarily generalize to the abilities or the performance of individuals outside of the lab. And I was finding that reading the research database, the literature, keeping up in autism, that a lot of the findings were not seeming to fit with the individuals that I was working with. And it dawned on me that in order to make it into some of these studies, you have to have pretty high behavioral compliance with being in strange places with strange people doing odd things. So about, let's say, 75% of the population in autism doesn't make it into those studies. So the folks who we need to support the most, we actually understand the least because we can't get them to contribute the data that we need to support them. So this sort of has now set me off in the last five or six years in thinking about taking the lab to people instead of bringing people to the lab. So there are two fields within computer science, one called ubiquitous computing. And these are folks who are interested in embedding cameras and microphones and sensors into built spaces to gather information about the environment and habitat and behavior. And then there are folks who are in the wearable computing field. And these are folks who like to put sensors on the body, weave sensors into fabrics, and have sensors in accessories that we carry that can tell you something about a person's behavior, their motor movement, or their physiological reactivity. So I wrote a review a couple of years ago that was sort of combining the advances in both of these two fields and trying to appeal to behavioral scientists the advantages of getting out into the real world, collecting data from individuals intensely over time in the places that they naturally inhabit and trying to show some of the affordances of what we can learn about them but also how we can help them in real time because we have information about them in real time. And the primary deployment scenario for me in applying this technology has been in autism and so I'll share with you three different technology platforms that we've been working on to address some of the core features of autism. So the first is around wireless recording of autonomic nervous system. This is a very old part of our brain and our ability to engage in mobilizing behavior if we detect a threat and to recover after a threat has passed. And the reason why I'm interested in anxiety and arousal is we see a much higher rate of panic disorder, fear disorder, anxiety disorder and sensory processing disorder in individuals with autism than we do in the typical population. The way that most people traditionally do stress research is by asking someone what is it that stresses you, how do you cope and what resources do you rely upon. Many of the folks that I was working with, they can't tell me that. They have either no language or they give very unreliable verbal report. So then one says well let's just watch this child and we'll sort of make an inference about what's stressing them through the course of behavioral observation. Well unless you know a kid really well, it's very difficult to do this. So I see kids who are sitting very calm and a parent says to me he's going to go off any minute now. Or I see kids who are bouncing all over the room and I say wow this kid really seems overly agitated and a parent says this is baseline. He's always like this. So there's really, it makes it very difficult for me to sort of come up with any causal relationship about what their internal state is and what may be going on in the environment. So it's got me interested in thinking about unobtrusive passive recordings of psychophysiology. So how is the heart, how are the lungs, how is perspiration, how are pupillary diameter changes, all direct measures of physiological arousal which relates to stress and to anxiety that we could have these individuals contribute their data passively. And traditional psychophysiology if you're going to do these measures and they've been around a very long time would require you to come into a laboratory space. You'd have a technician probably with a white coat, they would ask you to take off your shirt, put on a 12 lead EKG, put on a pneumatic and a thoracic respiratory belt to have your non-dominant hand on the table taped with electrodes on your two fingertips. Probably have some camera that's looking at your eyes in front of a computer screen and then they'd say, okay, relax. Pretend like none of this is happening and now look on the screen and let's respond to videos or photos or whatever the stimulus would be. A raise of hands of how many people you think of those who I'm describing on the spectrum could comply with that methodology. Okay, that's good. Those who do, what do you think they're responding to when you're recording that physiological activity? Do you think it's the stimuli on the screen or perhaps this much larger variable of being in this really, really foreign and demanding environment? So I started to question really the utility of doing research that way and I started a postdoc in the media lab a year after doing some work in this area. And Rosalind Picard, who's been one of my primary collaborators, is running a group called Affective Computing. And what she's interested in is teaching computers to understand the social and emotional state of their users. Basically, if you're working intently on a document, you should never have a Microsoft assistant come up and say, we need to reboot your machine. So if you knew that someone was leaning forward, if you knew that they had concentration as a facial expression that we could detect from a webcam, if you knew something about their autonomic state through a wireless sensor, we may, that computer may understand that this is not a good time to interrupt you and to wait until you're not in a condition like that. Well, she and I, and so she was developing several technologies that you could infer those emotional states. And I said to her, you know, there are many individuals on the autism spectrum who have this problem too. They experience high rates of stress and they can't communicate it. We know it's important, but we don't know how to measure it. So we, now for the last three years or so, really been working hard on how can we advance computing so that we can assist individuals with autism, which is, as I hope to demonstrate to you today, also advancing the technology. So what the technological capabilities and the needs of individuals with autism together are really creating steps forward that neither of our just computing alone or just trying to deal clinically and behaviorally with autism. So there's a sensor that I'm going to show you now. This is, we've started a company about a year and a half ago that's manufacturing these. I am a scientific advisory board member and I do have some equity in the company. So that's my financial disclosure. It's a wireless sensor. It's on the wrist. I'm wearing one now. It records electrodermal activity, which is a pure measure of sympathetic arousal. It records three-axis acceleration. So if I know where the sensor is on my limb, I know where this limb is in a three-dimensional space. And it records body temperature. And if this works the way I want it to, you are now seeing my real-time electrodermal activity, which is here in the blue. This is my body temperature and this is my accelerometer. So I'll show you if I'm in this Y plane, you see that the blue signal is the primary, the third down. And if I'm in the X plane, you're in red. And if I'm in Z, you're in green. So this is now showing me where my limb is in real-time. If you, these displays sort of, the resolution blows up. If this is panned out, you'll see that my EDA is starting to increase here. So as soon as I make you aware that you can see my internal arousal state talking to 800 people inside an auditorium, you are going to start to see some kind of a rise. What's lovely about this is I am recording my physiology in real-time. I can look at it and reflect on it. I can share it with you. And you may very well, using this information, adjust your interaction style with me. So I'm going to demonstrate. We've done a lot of work in this area. It's sort of criminal that I'm going to try to summarize this for you in only 20 minutes. But to give you sort of a snippet of some of the ways that we've been using this. We were working with occupational therapists who theoretically are inclined to think about arousal and arousal dysregulation and try to help individuals on the spectrum better regulate. And so we looked at 26 kids over four consecutive sessions in therapy. Not in a lab, not with a bunch of abstract stimuli, but actually undergoing therapy over a period of time. And we put a sensor on each of their ankles. So what we've actually found is compared to FDA gold standard wired electrical activity sensing, we get about 92% correlation by measuring on the wrist and measuring on the ankle. What's nice about this is you can free the hands up. These are non-stigmatizing. If folks have a hard time with it on the wrist, the ankle is a good sight. And we've had very, very nice compliance. We've seen over a thousand people who will adopt these sensors. We videotaped these sessions and now you have time sync video on the physiological record. So what you're seeing here is a young woman who over these 45 minutes, we've got a video of the session, what she's doing with her therapist and we can see internally what her arousal state is. And quickly what you'll sort of see for this first 10 minutes of time is she is pretty behaviorally disorganized. She'll be walking around the room and the OT is having a very hard time getting her engaged in a particular activity. She'll increasingly start to flap her hands. She'll engage in some self-injury. She'll throw herself to the floor, really starting to get rather agitated. And the OT who has no access to this internal state but is sort of trying to understand the state that the student is in is going to try to calm her down and is going to take her and just going to put her in a ball pit. And we see a nice, slow, steady decrease in her sympathetic arousal. I don't know what it is about the ball pit. I'm not making any claims about efficacy of this as an intervention. She may like to be seated. She may like the pressure. She may like germs, you know, whatever it is that is doing this. But you see, you know, she's more behaviorally organized now. She's sure her affect is lighter. You're going to get social referencing with the OT. I mean, it seems that now that she's calm some, this is freed her up to now have some social interaction. So the OT is pretty satisfied after a few minutes and she's going to let her back out. And you're going to see, so I love this. You see the sympathetic arousal increasing? That was before she eloped. She just tried to run out of the room. So if we knew, if that OT knew this in real time, she may not have had her out as quickly as she did. Now from an experimental psychologist standpoint, I love test retest reliability. So the OT says, okay, maybe you weren't as calm as I thought and she puts her back in and we see a corresponding decrease again. So we've just replicated the same condition of heightened arousal disorganization, lower arousal, better organization. She'll be in the ball pit for another five minutes or so. She'll take and put her on a preferred activity, which is a swing. And for the next 10 minutes, you're going to see nice load, steady decrease in her arousal. What's exciting about this is it gives us an ability to peer inside of an individual and get a sense directly of how their body, their physiology is responding to the treatment that we're providing. We also put sensors on the therapists. So what you see here is the child's electrodermal activity in the top and the therapist on the bottom. Not every therapist and child dyad is a good fit. We talk about clinical rapport. Some kids respond better to some therapists and vice versa, and we don't really know why. But I think, you know, so what we're doing, we're actually having the therapist now blind to the electrodermal activity. They're watching the videos and they're rating. What was the intent of their intervention? Did they think the kid was calm? Did they think the kid was relaxed? Or not? And then we're looking at what's the concordance between their physiology and the child's and who's leading and who's following. I think this is this idea of co-regulation that the therapist, and this could be a peer, this could be a sibling, this could be a parent. But this is happening jointly. This is a relationship. This is not just an arousal dysregulation problem with the child. This is going to be a dance of matching activation state between two people. And there's a lot of efforts for us now. This is all conceptual because we're still building this out. But if we could visualize this data in real time, how could you help an individual understand what state they're in? We can start abstract first, but then we can help them generate language for this or symbolism for this. Could we see when a child is performing well, when a child is not performing well? Is there a certain autonomic profile that later on we could use to predict? You know, a common scenario for me at school was a kid sitting at a table doing a mastered task. And, you know, they have IEP pressure to make progress and they're just sort of looking checked out. And the teacher comes over and they think they're being helpful and they put their hand on the kid's back and they pull the material forward and they say, let's get to work. And the kid stands up, flips over the table, throws the materials, self-injures, aggresses and runs out of the room. And everybody looks around and says, what the heck was that all about? You know, there was nothing wrong a second ago when this kid knows this task before. I've seen these kids with our sensors on, heart rate in this instance, resting at 125 beats per minute. It should be around 70. And what this suggests is that this child is overaroused at this moment. And what we're perceiving as a calm behavior, this sort of disengagement, may in fact be an active strategy on their part to shut out external stimulation. And the thing we should be doing is helping them de-escalate and what do we do? We place a demand. We place a demand on a system that is already overtaxed. You're going to get a fight or flight response. This is not a disobedient kid. This is not somebody who's oppositional or defiant. This is somebody who feels like their safety is compromised. They're going to fight you or they're going to escape. So the extent to which we could visualize in real time and feed that information back to the individual for biofeedback, feed it back to a therapist, feed it back to a parent, we may adjust our interaction style to meet the child where they're at, calm them down before we place a demand. Or maybe we need to rev them up before we're really going to get their engagement. This creates enormous amounts of data. We have a study that we just completed and are doing data analysis on that was five kids at Groton where we recorded from nine in the morning to three in the afternoon every day all day for 30 days. And part of what we're interested in is seeing naturally occurring changes between their physiology and when they're performing well and not performing well and engaging in some of these problematic behaviors. This is a ton of data. I've stood on a ladder with just one kid trying to take in all of this information and it's absolutely overwhelming. So there are some really nice ways for us to now start thinking about how do you find signals amidst all this noise. So I'm totally switching gears. I'm also running out of time. So I'm going to go through these this bit kind of quickly because I really want to show you these videos at the end. But I have also done some work trying to better understand hand flapping and body rocking in kids with autism. This is a very disruptive behavior. It occurs in about 75 percent of the population. We don't know why they do it. We all call it stim or self stim. There's no data that suggests that this serves a self stimulatory function. But when you when you don't understand the function or you misunderstand the function and it's not something that confers an advantage then we'll say there's nothing wrong with with extinguishing it. That's either through medication or through behavioral response blocking. We have some evidence though that this can help individuals regulate their stress. It could be calming or it can be arousing. It can help individuals up regulate or down regulate the amount of sensation. So they either created or they block it out. I've had people tell me that they can't feel their body in space and time unless they're moving. These are all adaptive functions and you're going to take an individual with an impoverished coping record repertoire and communication repertoire. And the thing that they do to keep themselves in a functional state we're saying you can't do that anymore. You can't find that deeply disturbing and problematic. And I think it's really our fault to some degree because we've had such a hard time measuring it. And so we were using the three axis accelerometers that are in the sensor. I can put these on the wrist and the torso and you can see these patterns jump out when he flaps his hands you get these big bursts. And when he rocks you're going to see these sort of sine waves down here in the middle. What we did is we trained a pattern recognition algorithm. We gave 50 good examples of an individual's flapping and an individual's rocking. And then we show the 90% of the data that it hasn't seen something called tenfold cross validation. So multiple times it's looking at random segments of the data that it wasn't trained on. And the question is how well did it detect that pattern from the noise. And in this instance noise would be non-engagement in the behavior. The algorithm was right 92% of the time in the laboratory and 90% of the time in a natural classroom environment across six people. And what this means to us is we can automate the detection of these behaviors. That humans have a hard time summarizing and we can look at this raw acceleration data to see is there regularity in these movements or is it random. If it's regular it's probably biologically mediated. If it's random it's probably environmentally mediated. This would enable us to start asking what function does it serve. If I could determine that function I may replace it with a more socially acceptable behavior but I wouldn't remove the benefit that the individual has from engagement. And so we're doing this by looking at physiological measures before and after. We're looking at preferred events, non-preferred events. We're looking when they're unhytened sensory environments and less so. We've now been porting this to mobile phones so we can get teachers and parents to give us that training data by opportunistically telling us when the kid is flapping and rocking. That trains the algorithm. And then this phone can run all day in the child or the therapist's pocket and tell us what the rate of the behavior is. And if we can correlate that with what environmental demand or activity they're engaged in and we get a better sense of what function it serves. Okay so the very last thing. If I can have permission to go like two minutes over time because I'm so amazed at this project. So I got a yes there and I got a hand wave from an organizer said. There's another colleague of mine in the Media Lab named Deb Roy and he gave the most phenomenal TED Talks. So for those of you who know about TED Talks, birth of a word. I'm going to borrow some of his videos for this with his permission but you should see his whole presentation. He and his wife put a camera and a microphone in every room of their house and recorded every day of the first three years of his son's life. So they have 900,000 hours of audio and video and what Deb was interested in is language acquisition. He's actually got a background in linguistics and is very much interested in artificial intelligence and machine learning to take massively large data sets and to try to extract information from them. Three years of video would take you three years to sit down and watch it. So let alone find the periods of interest and do any kind of transcription. So he's come up with these marvelous ways of getting at the sort of heart of his data. So here's an example of one way that they can first do a pass is you see two parents and a child in the kitchen. Anything that is not moving, that's static. Those pixels will get deleted from the scene and now you have a sliding window over time where you just preserve pixels that are moving. Now the intent here is not for you to understand who's in the image and what it is they're doing. It's basically a smudge for us to then go back and look in a record. There we go. What room is their human movement? That's a hallway and is their speech. So we can take the audio record, we can turn that into a spectogram. This now has visual properties, which means that we can extract a waveform. We can identify where their speech. There's an algorithm that can automatically mark what it thinks is speech. So now all that a human is going to have to see is video where you had movement of a human and where you've got segments of speech. Where now a human can do a transcription. If you can do that transcription, this means that you can take one or two words. So the next video I'm going to show you, we use the word GAGA. And that's got a certain profile within the spectrogram in terms of pitch and volume and prosody. And then we have an N word, water. So you're going to, this is over a three month period. This is all automatically retrieved by the algorithm. Human just puts in the beginning and the end. And you're going to see essentially the sun developing from GAGA to water. They can also do visual tracking of people of objects. So this does not require a human. So we can quantify approach. We can quantify distance between people. We can tell where they're looking, where they're moving. They can fit 3D models to people's heads. If you assume that the eyes are approximately for the eyes, we can see where people are looking without doing eye tracking. This one was for Connie especially who has serious expertise in joint attention. He can take his videos and he can stitch them together. This is actual footage in the house. So they call this house fly. So you can now take a tour of the house through all the video that was recorded. And then we can look at video within the house, which you'll see in just a moment here. This will be between their nanny and their son. Then you've got the audio record and you've got transcription of what was said. So this is going to skip a scene now. This is now Deb and his son. This is about a 30 minute period where they're playing in the living room. It's going to be sped up. We can get a trace of where people are. So dad's green son is red where you have yellow is where they're co-located in space. You could call that a social hotspot. Then we can drag a perimeter around that area and see what words were actually used and at what volume in that area. And so you could do this for the playroom. You could do this for the kitchen. You could do this for the bedroom. And then the final video I'll show you is a way to visualize this data about the production. So in this instance, this is just one word. And this is over initially a two month period and then you're going to see another two month period. And it's showing you the word that was spoken and where it was spoken and it's going to show you at what density. And then they make these into topographical maps. So people often say, man, that kid's thirsty. And then how this changes over time. So when I saw Deb give this talk two and a half years ago, pieces of this, I said, do you realize that you have what could potentially be a very powerful mechanism for understanding autism in the home? So parents express concerns 14, 17 months. You've heard about the waiting list. You've probably had to wait yourselves by the time you get a pediatrician to take you seriously and get you over to an autism expert and get a diagnosis and get services. The kids four or five, we could have been intervening it too. We know that there are red flags. We know that they don't respond to their name the way that other kids do. They can have a lack of joint attention or sticky attention. They don't explore their environment as much. They don't play as creatively with their toys. These are all things that we could detect in the home. If we had good records. If we weren't reliant on parents trying to deal with the stress of life and relay really good information to researchers. So it's not going to scale for all of us to have cameras and microphones in our houses. So I was able to convince Deb to help make a portable version. So we have something now called a speech home recorder. And it records top down video face forward video. So now we get child spaces, which also lets us do 3D image modeling. And it's got a microphone. We can wheel it in. We can record continuously for three months. We can do analysis offline. This is my house for the last two years. I have a daughter who's two years and six months. We've been recording her every day for two years in her room in the playroom. Have wonderful records of her development. Have her first crawling or first walking or first words. And I just want to end here that there's hope I think for the future. Some of this is crystal ball gazing, but I'm involved in a network of probably the largest scale effort from computer scientists and behavior scientists. This is a National Science Foundation Award. It's 10 million over five years. And these are folks who are interested in developing video audio and physiological sensors for the purpose of earlier quantification of the phenotype of autism. And then trying to understand how really good teachers are above chance able to teach a child a new skill, how they know when to push and when to pull back. How can we understand what it is they're doing and come up with assistive technologies that let non experts perform more like experts. And there are a bunch of people that help with this and funding. And I thank you for your attention. Thank you, Matthew. I would ask the panel to please come up and take one of the seats here. So we can start the question period. Dr. Fairbore's Missa has agreed to say a few words and I want to make a couple of unscripted comments. I've been privileged to have worked with him closely for the past two years. And he's a man of extraordinary passion, vision, and capacity to make things happen. Keita is an example of this. This summit is an example. And I can tell you the bottom line is that whatever he does he wants to be of use to the child and the parents. He is a parent. He understands parents. And the one admonition I had about this conference is make sure the speakers are intelligible and useful to the parents. And I thank all of them for that. So Dr. Mase, we're very, very grateful for your ongoing support of these efforts. Thank you all. Thank you for being here. I hope you had an enjoyable time so far. You have certainly heard a lot of very, very powerful presentations. And I hope some of that would be of some use to you. Thank you, First Lady, for being here today. And we sure appreciate your presence here. And welcome to Orange County. I was accidentally put in the situation of being involved with autism as many of the parents have been in this situation. We created KIDA so that we can create an entity to provide some of the solutions in an area that it's still, at its infancy, a lot of questions are not answered, a lot of solutions are not provided. We at KIDA cannot promise you that we can cure the child or we can have the solution that everybody is looking for. But what we can promise is this, that we will do our very, very best. And I pledge my own effort in this matter to seek to find the solution so that we someday will shut KIDA down, the cure is done, and we can distribute it to everybody and everybody can get along with a happier life. Thank you all for being here and I hope that you would enjoy the Q&A that is going to take place now. Thanks. Okay, the panel taking their seats. Okay, the first question is to Dr. Goldberg. What can we do to improve early identification of autistic spectrum disorders so the young children on the spectrum can get started as early as possible with interventions and treatment? I just saw the remarkable use of technology. So as you were saying, we all don't have that kind of technology in our homes, but parents can record early behaviors of their children, of infants, especially if they're in a situation where there's a risk condition, where they really have a child on the spectrum. So if they keep a diary, I think, I was thinking as I was watching the technology that Jean Piaget will be sitting up in his grave. He would be thrilled to see. He took copious notes by hand and kept diaries of his young children's development, but to see what the technology is doing for us. So even without that, don't tape over your tapes. Keep separate tapes of your kids as they're developing. Also, I think we want to see parents advocate and this is community help parents advocate for listening to them. When they have a concern to have the health care professional to have the person with whom they're in contact, listen to them, get the referral, get the evaluation so that the interventions and treatments can start earlier. If I could just add one thing too. So the American Academy of Pediatrics is now recommending mandatory screening for autism risk at age two. So all of your pediatricians should be doing that. It doesn't mean that they're doing it because that recommendation is being made, but that's an area to advocate for. They should, if you have a concern, they should do it. And also on that note, we need to get, be sure there's medical training too that the pediatricians know even before to start to look for early signs and so we probably need to make sure in our medical schools we are getting the training in so that they're aware of the early signs. Thank you. Next, for Dr. Shane, regarding your smart-ass app, did I say that right? Exactly. Yes. The question, is it realistic for families to use a visual language when everyone else in the family talks? Well, it, I, for me it's in, the analogy is similar to the family that realizes that they have a hearing family that has a deaf child. I know that in our center we, where we see hundreds of newly diagnosed deaf children a year, when we tell the family that their child is deaf, we lay out some of the options, the technological options, the possibility of a cochlear implant and so forth, but we also start them early on in another language. We teach them how to sign language. That child is not able to hear, but through sign visual input, they do learn language and there's considerable evidence to show that these children learn language very well. From my perspective, if we think of the child with autism having dramatic difficulty with understanding spoken language, why not introduce for them a visual language as well. The idea of having an easier way of doing it, it's one thing to have your hands and you can learn to sign and it's with you. It's difficult to introduce a language such as a visual language that we're trying to create. However, we now have the tools and getting better with the use of these kinds of tools. I think that if we think of the child who doesn't speak as a child, similarly to the child that's deaf, and we can provide the input that allows them to be able to understand and we have many hundreds of examples of how this occurs. And I think that it gives us a beginning. And finally, it's often the case that when children become facile with visual symbols, and I suspect that there are individuals, people in the audience who have experienced this, it seems to be one of the best forms of speech therapy. Children often become much, they begin to spontaneously speak. So I think it's difficult to introduce it, but I think that the payoff is well worth the effort. Okay, the next is for Connie Kassari. We've heard today about 30 hours of therapy, 35 hours, 40 hours. What is the evidence for how many hours make a difference and should I worry if my child cannot get the requisite 40 hours per week of ABA therapy? There probably is a dose effect. The exact number of hours is unclear. 30 hours compared to 10 hours. Kids with 30 hours do better. If kids can only get 10 hours, they do better than kids with only two hours a week. So always more is better. But I think the bigger issue is what is being taught and the quality of those services. And so usually when people talk about dose or hours or including everything the child is getting, it could be some speech, it could be some voice call. Boy scouts, whatever. So that dose, keeping a child engaged throughout the day, even with the family is probably the most important aspect of his life. So not letting them go off and do nothing for long periods of time. Whether that's at school, whether that's at home, dose probably matters, but the exact number of hours is really unclear. You just want to keep them engaged. Any comments on that? The panel? So I think Amy Weatherby at the University of Florida has done some really nice work using parents as therapists. That's Connie's done this too. But within the context of the home or what Amy finds is even 20 hours if the parents are engaging the children in teaching moments of just day to day routines these kids can have great gains. So I totally agree that keeping them engaged and the quality is probably more important than rote number of hours. One thing, we have, I have a graduate student who's been doing a study of schools, kids in school. So these are minimally verbal kids that are in special ed classrooms for the most part and just looking at how much they're engaged in their school program and there's a huge amount of variance. But we've seen some kids who are only engaged for six minutes out of two hours. We've seen other kids who are only engaged for six minutes. I think that probably makes a difference. So even if you're supposedly in hours of something, it's the quality of that time that matters. I just like to add that the idea of 30 hours of intervention, if you look historically, it came out of the early work of Lovas' study of children who recovered. And there's not been a lot of replication of that. But we use that 30 as some magical number. I'm certainly an advocate for early diagnosis and lots of intensive instruction. And I don't think we really know the best number of hours per week. But 30's, if we look at it, why 30? I think you have to understand it. There's also just to throw something out there in psychological terms is a term of the Hawthorne effect and when you pay attention to behavior changes, if you spend more time paying attention, well, maybe the behavior is going to change more. But again, we don't have a magic number. But quality is absolutely the right statement to make. If I can just make one last comment. So we don't expect a typically developing kid to have a full-time job. They play a lot, they interact a lot. So I love the intervention approach, but as much as this could be fun, this could be playful, this is not seated at a desk, this is a little bit of saying what's your name, 500,000 times when you know the name. I just want to say one other thing. You have a bottle. No, no, no, it's not a rebuttal at all. Matthew opened the door and you responded. I'm actually, and I'm actually surprised that there has not been a great deal that's been referenced to ABA and I respect ABA. I don't want to be put in an anti-ABA campaign. But it is interesting in this conference that this isn't just about ABA. ABA is right for some children. We also don't have the right, we haven't come up with the right formula for saying that this child needs ABA, this child needs this treatment. So the efficacy, we have a long journey ahead of us to work out the efficacy. But I think that there's something unique about this audience in terms of the conferences and it's not just all about ABA. And I think that's great. We've had, we've had several questions come into Alice and Sinker and unfortunately she had to catch a plane back to the East Coast so she can't be on the panel. So I'm going to throw this question open to the entire panel and it concerns her slide on alternative therapy. The person who writes this is both a parent and a professional. It may be true that gluten-free diets and supplements do not cure autism but how can we expect a child to attend to any therapy if they're not feeling good or they're in pain? As parents, yes, we do sometimes approach it as scientists. We have access to our child 24 hours per day. We take care of our children 24 hours per day. We take data, we research and we read and we advocate and we can be quite objective. So I think the fundamental question here is how would you suggest a parent evaluates the opportunities for alternative therapy? I think parents really need to look for ones that are substantiated by science and avoid the ones that are popular that's the therapy of the moment and some of them can do much more harm than good. Some of them, if your child doesn't eat gluten there's not going to be a downside to that but something like chelation that's very harmful. So I think we have to be, parents have to be vigilant. We do have the internet. You can look for science. You can Google and see whether there are studies to support it. Look at the intervention that's with that to see whether there is something behind that. Check with medical professionals before implementing a change in diet. I think this comment may have come up before when we try something we want so much to see that it's going, we believe it, we want to believe it and so we filter out the information that's not confirming and we just attend to the information that is confirming. So we may dilute ourselves into thinking something's working so sometimes people are trying several variables at once they're trying several new things all at the same time and then it becomes hard to say which one was having the effect. So she sort of dropped the bomb and then isn't here to respond to it so this is my responding, not her responding. I think there are a fair number of people in the field who see autism not just as a brain based disorder this is a whole body disorder. We have issues of gastrointestinal problems, we see immune problems, we see cellular problems. I mean for those folks who have some medical complications some of these interventions may address those medical complications and then enable them to be benefactors of some of the other interventions that have been proven. That's one comment I want to make. Another comment I want to make is autism isn't one thing. I mean in some ways I actually think there's probably more heterogeneity in the world. So I think it's a good question and I think it's a good question and I think it's a good question and I feel guaranteed that it's going to work for another kid. You can have Jenny McCarthy saying that the diet cured her son but that doesn't mean it's going to work for everybody else. It doesn't mean that it's got, I mean I think Allison is right to point out that it's not a judgment on who's giving the intervention it might not be if there's, you're not causing harm try it, if it doesn't work, move on and do it with some supervision. The last thing I want to say is that science is absolutely imperfect. If we knew what we were doing we wouldn't call it research. So when you do science one study is never sufficient in and of itself. What you want to look for is replications where people have found the same phenomenon across a lot of different people in a lot of different settings of the top than the bottom have not been well researched. It's not that we have evidence that they don't work. They're very few studies and if you have very few studies and two say it works and two say it doesn't there's nothing conclusive about that. So there's an area here too where we really it's our responsibility as a professional and scientific society I think to look at these take these seriously. I think that families also hope and one would expect that the first line of defense are going to be the professionals that they interact with. So one has to assume that the professionals have read the literature and have something intelligent to say about the different treatments. Some of them were left out today auditory integration training facilitated communication. I think that this that are harmful really do have to be weeded out. Families ask me every week I have families asking about different kinds of treatments and it always it's a difficult question to respond to. But there are those that are truly hurtful harmful. The hippotherapy the writing therapy well where there may not be a therapeutic benefit although I think there may be there is some children enjoy it. So if we can look at that as the enjoyment factor and hopefully has some therapeutic value I see I would see no reason not to do something like that. I'll jump in here too. So I think I'm curious about what what you talked about actually with the technology that maybe connecting the technology to the treatment so that we better understand what kids are experiencing especially for minimally verbal kids. You know we have parents who come in for a therapy session the kids been up since 3 a.m. and he doesn't have a great session. That's data for us but should we have even attempted that session what's going on with this child that he you know didn't have any sleep also mom didn't have any sleep or the child didn't eat the day before all of those things have to affect how they're going to perform. So there's so much heterogeneity in the you know when we collect data there's just so much heterogeneity and what you want to be moving towards is progress but you have to understand what's going on both sort of physically with the child I mean it's more than just complying with the therapy so it's a very challenging and maybe that's going to help us understand what's going on a little bit better. So I hope if it's in the right hands like folks like yourself we could absolutely do that I mean one thing that this is kind of a geeky comment and I didn't make it in the talk the way that we traditionally do science is what we call no-mathetic you're looking at large numbers you're taking and so much heterogeneity. One has to wonder if we should really be thinking that there's such thing as an average autism and instead maybe be looking at the level of the individual which we call idiographic or single subject research and what I think that we have a real bias for the large group one sort of philosophically we think about laws but two because it has not been tenable to get information about people repeatedly in developed technologies that go where people go and that don't require a lot of effort on a parent or a teacher or the child to be documenting anything so we know about the environment we know where they are we know about their physiology we can infer their physical activity through kinds of object interactions they have we can get some of this data I mean we know sleep is a huge problem in autism and the school does beautifully one day same tasks the next day and total meltdown I don't know if the physician changed the dose of meds I don't know if they had a poor night sleep I don't know if they have acid reflux I don't know if they have a headache or an ear infection because they can't tell me so the extent that we could gather this multivariate data on the same person and follow them over time I think we might be able to tease them out a little bit but I think it's a good opportunity for telecommunication and technology and they are very interested in facilitatory technologies for autism but they remind me of the following facts we have a lot of gadgets out there we are lacking often as a common platform the gadgets are hard to use and they're expensive so one of the parents is writing how realistically do you see that these technologies are going to be brought into the home in a cost effective simple manner for people who have not been to the MIT media lab. So I've definitely drank the Kool-Aid so I can total but I'm not a blind advocate for technology I mean the reality is these technologies are only so good as they have utility to the people who can use them. So one of the ways that we've been dealing with this is every technology that we develop we include parents and user and the support staff so individuals on the spectrum their teachers and the parents in the code design so we'll we'll all have my students come down to the growth center and they'll observe the kids and they'll generate ideas for what's really difficult for say students to teach and we'll always have the students do a project at the end of the semester and they'll come up with this great really fancy you know complex technical solution and we'll take it back down to the growth center and the kids you know the students are just so happy to revolutionize autism and the parents says this sucks I don't know how to use it it doesn't give me any information it's useful but we'll go back and they'll reiterate that design and we'll do this rapid prototyping back and forth until we get it right so the first thing is that we're building the technology with the people who are actually going to use it this is participatory design or code development cost is going to be an issue so these are specialty devices now you have so if we can increase volume if more we can increase in speed and decrease in size and decrease in cost and now that you have iPads and iPhones and Bluetooth and things that we're already using as parts of I mean there are technologies we live with we can start to do sensing and analysis on those devices so I actually think that we're going to see that some of the capabilities I'm showing you that seem really high tech now are going to get this is from a parent and maybe Wendy and Connie can comment on this how can a parent know the difference between if a younger sibling is simply mimicking an older sibling with autism or the sibling is displaying signs of autism my older daughter on the spectrum is two years old and their younger sister 11 months has been hand flapping throughout the day for the past month there's a recent study that just came out with a statistic that's a little startling about 20% of younger siblings with a child already with autism are going to be on the spectrum themselves and that's a study by Ozanoff's and colleagues now it also means 80% or not so that's the important part okay and I in it may not we don't it's one as you were saying before it's a broad sample you want to get replication changes and instance rates change but that does mean there is a higher risk in this family and so I say when you see something like the repetitive behavior like the hand flapping you know it could just could be the imitation but it also could be an early sign so it would be that would be a child definitely worth following up not that it's definitely going to lead to a diagnosis but it'd be worth getting some more evaluation I think that the family should be followed immediately and let professionals kind of rule that out with obviously with the input from the parents. Before you answer let me just add a question from a parent should stimming running back and forth that is not violent or dangerous to the child or family be restricted or redirected stimming self stimulation. Yeah so you know I have probably a different opinion about the stimmy behaviors my daughter who's 24 and typical did a lot of hand flapping as a little one I didn't worry about it too much so I don't usually restrict kids and I don't usually tell them no I think I agree with Matthew that there is a reason why kids are doing these various behaviors and so if you work on the kinds of things that kids need to learn or to be productive typically those kinds of behaviors fall away so you have to ask yourself why is he running around is he excited you know does he not have anything else to do you have to figure out what that is serving so that's true of the little the baby too so between 12 and 24 months those symptoms aren't very stable we have a project where we're seeing kids that aren't necessarily siblings sometimes they're first born kids that are showing some symptoms that seem consistent with autism we give them treatment and some of the kids just seem fine and some of the kids continue to have issues but we don't right now have a way of predicting very conclusively who's going to end up with autism and who isn't but it does seem to be some of those symptoms if they're going to end up with an autism diagnosis I think the biggest issue is that yes we should be monitoring and we should get them evaluations and so on what are they going to do there aren't treatments out there there's no access there's no insurance coverage regional center won't even test your kid until they're 18 months in LA so you could see something I don't know through the web or some sort of training or something that parents could do or could access because right now it's not a good situation even if you do see that your child has some symptoms just a post-cript to that also it's not about a single symptom so that if you see hand flapping and everything else in the child's development looks typical then that's not a cause for a long but I think that's important to remember that autism is not about one single symptom and it doesn't manifest the same way in all children so if it's not disrupting anything let them do it I mean nobody behaves for no reason there's a myriad of things that we can do if we select them then there's probably some function to it the other thing I want to point out is I'm going to sit here and engage in repetitive motor movement instead of you tap your leg we have socially conformed stereotype behavior all over the place that serves a function to us when we're nervous, when we're tired when we're trying to concentrate maybe it's just a little bit more extreme in these folks but it's not that abnormal it's only when it interferes okay it has been a very long morning and I know some of you want to spend the final question here and I'm going to open it up to the whole panel because it's a very interesting question I have read and heard mixed information about the diagnosis of autism being a quote lifetime diagnosis end quote while others are talking about the child losing the diagnosis what is the current stance in the field Howard do you want to start off? there's the term isn't isn't so much cure as recovery and that's really what Lovas first talked about and Greenspan talked about recovery DeLong and Duke talked about recovery but they were all they were all using different approaches one was pharmacologic one was behavioral and one was floor time the idea of recovery we certainly see children at our center we see individuals who have many of the symptoms that lead to the diagnosis of autism but as time goes by they look more like children who have just language problems I've worked at children for a long time and my earliest years were in the developmental center and I do see children now that had what would be considered a language disorder in the 80s and now they have they have autism with a language disorder or in the 80s we would have said at the time we used the term they were mentally retarded with autistic like symptoms now we say the person is autistic with intellectual difficulties so there's been quite a change in that regard Connie? So I think about it as a developmental disorder and that there are certainly kids that recover that function that function fine it's hard to predict which kids are going to be functioning better versus those who are not going to be functioning as well but it's a developmental disorder so that kids who don't talk by age five everyone freaks out about and yet kids, adults can learn to talk so recovery I think most people think about recovery meaning it's your symptom free and there are a lot of agencies that are now touting recovery in their sort of advertisement recovery I think means just that you do that in a society we want all of our kids to recover to be functioning in society and possibly with better acceptance everyone can function fine My colleagues have said I also would say that what is recovery will differ how you define that I think what we're talking about is adaptive functioning so that if a child grows up to be an individual at a job where the child's skills fit with the demands of that job the child is able to form productive social relationships then that can be recovery it really depends how you define recovery so it doesn't mean that everyone is going to look the same behave the same way or be completely symptom free but if the person is able to grow up to be an individual who can have a productive and satisfying life then that may be what recovery is so I actually have nothing more to add because I think that's I agree with all of that other than I clearly some thought went into who was invited to speak today and I actually want to applaud you for that because the majority of the field is looking at genetics and at neuroscience trying to understand what the cause is and genes are so complex and brain is so complex just the baseline understanding is much more complex than more and all of our resources majority of our resources are going to that research that doesn't translate currently into any improvement of quality living for individuals who have the spectrum so this recovery issue to me whether what's the cause or what's the cure what can we be doing here and now to help individuals improve the quality of their living and I think this organization that we have can cure autism now and Dan defeat autism but I think we really need to have Tan which is treat autism now we have to treat people who are here who need the assistance that we can provide and we clearly can make progress and we need to go in that direction so Tan I want to be careful though genetic research is very important neurological research is very important but we don't have to wait it's going to take a long time and we have started today can be continued on the KEDA website question at KEDAS.com will be in touch with our speakers I want to first thank all of you you've been a wonderfully attentive audience and very participatory and I'd like to end by thanking our wonderful panel for their contributions