Skip to main content

tv   Discussion Focuses on Sesame Street and Autism  CSPAN  April 13, 2017 11:42am-12:52pm EDT

11:42 am
presidency," historians discuss the relationship between alexander hamilton and george washington. >> washington is a horse which isser. he himself is a person of volcanic temperament, but he learns early on to control himself. he learns self mastery, and he is this horse whisperer who actually calms the very high-strung, very skittish, very fast alexander hamilton. and hamilton gets himself into a lot of trouble. >> for our complete american history tv schedule, go to c-span.org. now, researchers and advocates talk about autism awareness with julia, "sesame street's" newest puppet character who is autistic, and advocate holly robinson pete. she moderates the workshop event. ♪
11:43 am
my name is jasmine. i'm 7 years old. i share my bedroom with my little sister. she is 6. our big sister alyssa is 11. she has her own room. usenia has autism. she can't talk. we all get ready for school together. some things are really hard for usenia, like brushing her teeth. and brushing her hair. it takes all three of us to do usenia's hair. she doesn't like the way the brush feels. alyssa and i sing and clap while mom braids. i feel happy i can help her. usenia gets a lot of attention in the morning. but my big sister and i get time with my mom and dad, too. dad is really good at putting on jewelry. he helps alyssa, while my mom
11:44 am
brushes my hair. i like how she does it. >> pretty. i love it. >> i love having usenia has my little sister. she is amazing! >> i think you're amazing! hi there! i'm here with usenia, who is full of joy at the moment. and also jaslin and alyssa. what do you like best about your family? >> they all treat us the same. like, we all are equal. like, it doesn't matter if usenia has autism. my parents aren't just going to focus on here and leave me and jasmine out. >> hi! hey, let's have a group hug. let's all hug. i'm in the middle of love. i'm in the middle of love! ah, this is the best.
11:45 am
>> well, welcome, everybody, to this standing room only crowd. i see some friendly faces in the back standing. i'm jeff dunn. if i haven't med you, i'm the president and ceo of "sesame street" workshop and i'm delighted to be here with all of you. "sesame street" and autism see automatic children. i wanted to open by spending a few moments with you, talking about why this event is so important and why autism is so important to sesame workshop. and perhaps the best way to do that is to quote. quotes are always great. and this one is from the famous american poet, maya angelou. this goes to the heart of who we are and the work that we do. and she said, it's time to teach young people that in diversity, there is beauty and there is strength. in diversity, there is beauty and there is strength.
11:46 am
and that's really been what sesame workshop has been about from the very beginning. since we first started, we have promoted this expansive attitude, and we have created one of the first truly racially diverse neighborhoods on television, and one that featured muppets, as well as humans, of varying abilities. and just as importantly, varying disabilities. our focus has really always been to help kids everywhere grow smarter and stronger and kinder. and, of course, that is what this initiative is all about. all three of those things. let me just make one other observation, since we're here in this wonderful space in the capitol. kids -- our kids, our audience, they're little people. they're three feet tall. they are nonpartisan. they are too innocent to have biases. they're too innocent to judge. and so it means something to all of us at sesame to be here today
11:47 am
with all of you. you know, who -- who represent, you know, politics, as well. to have you, regardless of that, to be here from both sides of the aisle. and be here for kids. and that's an amazing thing. so we appreciate that. we welcome you. we hope you learn something from today. and we hope this is a memorable event in the beginning of a great national conversation. so with that, let me turn it over to sherry westin, our executive vice president for social impact and philanthropy. and she is the with unwho leads this tremendous group of people that have worked on this so hard. both on this initiative and this event. and it wouldn't be possible, neither would be possible, without her. so come on up, sherry. and she will be your host of the day. so come on up. thank you. >> thank you, jeff. thank you, jeff. and most of all, thank you for your support. he has been the biggest champion
11:48 am
of this work. and we're so grateful. but on behalf of all of my colleagues at the workshop, thank all of you for being here. to take the time to join us, really means so much. the video you just saw is from sesame street's initiative, amazing in all children. and you may know that "sesame street" has a long history of looking at issues through the lens of a child. and given that 1 in 68 children in the u.s. today are diagnosed on the autism spectrum, we knew that this was an issue we needed to address. so we launched our initiative in the fall of 2015. and we had two very specific objectives in mind. one, to create tools and resources for families with children with autism to make everyday moments easier. but second, we wanted to reach the public at large to help destigmatize autism. to help increase understanding,
11:49 am
awareness and promote inclusion. and acceptance. so this is where julia plays a critical role. so hopefully by now you have heard that julia is an adorable little 4-year-old girl. she's very curious. and she has autism. she was first created online as a digital muppet, and as part of a wonderful story book that was called "see amazing 1, 2, 3" and written by leslie kimmelman, who is here today. my response to this initiative and to julia herself from the autism community was simply amazing. and we decided that we needed to bring julia to life on "sesame street." so i'm thrilled to say that the episode, "meet julia" will appear on "sesame street" on monday on pbs and on youtube. so we hope you tune in. but if you can just think for a
11:50 am
moment that through julia, we hope the children with autism will have a character they can identify with, hopefully feel less alone. but byalone, but by introducing julia to her friends on the set, on "sesame street" we are able to raise awareness, to raise and increase understanding and to model inclusion. so when big bird tries to meet julia and she's a little less responsive, abby is able to explain that just because julia may not show it in the same ways, she still wants to be your friend, she still wants to play, she still wants to be included just like all children. and i must say on a personal note that the feedback from the autism community is really what makes this work so very rewarding. one of my very favorite stories came from a mother who had a young daughter with autism and she used that wonderful book "see amazing" to help explain to her daughter that, like julia,
11:51 am
she, too, had autism. and she responded "so i'm amazing, too, right?" so i think that we from all of these wonderful stories, there's so many of them, we know anecdotally we're making a difference but i'm so pleased today because today we have research to support that. we are grateful to have the opportunity to share the this with you, to bring together a panel of distinguished experts that we'll get to in a little later including the researchers who looked at the impact of this work. so we hope that will be a very important discussion around an issue that really does touch so many of us. but we are especially honored today to have a congressman mike doyle with us from the great state of pennsylvania. and congressman doyle is serving his 12th term in congress. he serves on the house energy and commerce committee and is the ranking democratic member on the communications and technology subcommittee but i think perhaps most important to
11:52 am
those in this room is it was congressman doyle along with congressman smith from new jersey who founded the coalition for autism research and education, otherwise known as c.a.r.e and it's the first dedicated to autism advocacy on capitol hill. this was in 2001, i think. today there are 117 members of the bipartisan autism caucus which congressman doyle along with congressman smith still co-chair. so we are so grateful for your leadership on this issue and especially that you would take time to be with us today. congressman doyle? [ applause ] >> good morning. this is really an exciting day and i'm pleased to be here. when chris smith and i got together to form the autism caucus, one of our main objectives was to educate other members of congress about autism
11:53 am
spectrum disorder. we know we need to get back to basics about what asd looks like and what we can do to reach out to our friends and neighbors who live with it everyday. that's why it's so important about julia and the initiative being taken on by sesame workshop and "sesame street." at its heart, it is taking our shared goal of education and taking information out to the widest and most important audience out there -- young kids and their parents. we announced "sesame street" see amazing in all children initiative right here in october of 2015 so it's very excited to get to meet julia today at her first public appearance a little more than one year later. see amazing was created to provide resources to families, teachers and caregivers around the country to educate them about autism. it also includes online guides and tools to help families touched by autism overcome
11:54 am
common challenges like brushing teeth, crossing the street, going the supermarket. the panelists you're going to meet here today are going to be able to speak to just how effective the see amazing campaign has been. so i'm going to turn it back over to them but i wanted to say that i'm honored to be a part of this journey and i'm excited to get to know julia who can represent all of the amazing kids we know with autism. have a great day here. [ applause ] >> thank you so much, congressman doyle. and now i'm going to turn this over so we can get started to our moderator, holly robinson peet. holly is probably best known as an accomplished actress a "21 jump street" and "hanging with mr. cooper." but i think perhaps her most valuable role has been that of flan tloe miss and advocate. after her father was diagnosed
11:55 am
with parkinson's and her son was diagnosed with autism, she and her husband, the former nfl quarterback rodney peet started the holly rod foundation dedicated to providing help and hope to underserved individuals and families living with parkinson's and autism. so i think you can see that holly's personal experience and the significant contribution she has made to the autism community make her an ideal moderator for today's event but it's also worth noting that holly has a special connection to "sesame street." in 1969 when "sesame street" first launched, her father matt robinson was the very first gordon and in fact i think holly even appeared on the show as a little one. so we're especially pleased to have you with us today. welcome back. [ applause ] >> thank you. wow, thank you, sherrie, thank you anyone who had anything to do with bringing julia to us.
11:56 am
this is such an amazing moment. as sherrie mentioned it's a full-circle moment for me so briefly, back in 1969 i was five years old and my dad came home, i was living in philly and he said "hey, i just got this great new gig and it's going to be in new york, i'll commute back and forth." "what is it?" "it's a children's show, it takes place on your block and there's kids of all colors" and i was like "good luck with that, maybe it will last." [ laughter ] nearly 50 years later here i am moderating this panel. i do have a son with autism who is the love of my life. i always like to say i wouldn't change my son for the world but i would like to change the world for my son and that's something that i think anybody who's been touched by autism can relate to. a beloved muppet who is besties
11:57 am
with elmo who has autism that is a game changer in the autism community. so i'm just so absolutely thrilled to be here and i thank everyone at sesame workshop and "sesame street" for approaching this in a way that is so authentic as an autism mom this is something that is really helpful and for those of you not touched by autism this is a wonderful way to educate you as well so "sesame street" has a history of featuring and celebrating children of all different abilities and now with this new see amazing in all children initiative they are showing just how amazing kids with autism truly are and coming to a better understanding about autism through the beloved "sesame street" friends makes it all the more accessible and it's all part of "sesame street's" magic. >> magic! magic! did somebody say magic?
11:58 am
>> oh, many i goodness! it's abby my favorite fairy, let's give her a round of applause. [ applause ] hi, miss holly! >> smooches. >> you're an honorary fairy miss holly. >> i always wanted to be a fairy. i'm glad that you're here, abby. >> i had to be here. i just had to come because i want to introduce everybody to julia. she's my new friend. she has autism and she's amazing. >> well, i'll bet she is and we cannot wait to meet her. >> yeah, well -- i tell you, we do all kinds of stuff together. we like to play games, everybody, and we sing -- boy can julia sing ♪ she just loves to sing oh, wow and she's a good painter, too. uh-huh. >> i'll bet, i just can't wait -- i heard that a lot of your friends didn't really understand julia at first. >> yeah, that's true, but i tell you what it didn't take long for
11:59 am
her to see how amazing she is. >> well we have a clip of the first time that big bird met julia, should we show that abby? >> you have that? >> we have that. >> you have that? you know that clip and i'll go get julia! [ laughter ] oh, bye! [ laughter ] >> so you are in for a great treat because we'll show you a little preview of julia's first "sesame street" episode which will air on april 10 so mark your calendars. so right now, here's your sneak pee peek. >> here's some more paper, guys. >> thanks, alan! just a little more. >> that's nice. >> thank you. >> oh, hey, welcome to "sesame street." we are having some fun with finger paints.
12:00 pm
>> hi, guys. hi, elmo, hi, abby. >> hi, big bird! >> the who's this? >> this is our friend julia. >> oh, hi julia, i'm big bird, nice to meet you. julia? >> julia's just concentrating on her painting right now. you guys are doing a great job. alan, i don't think julia likes me very much. >> well you two are just meeting for the first time. >> so she's shy? i get that, i can feel shy sometimes, too. >> well, with julia it's not that that, you see she has autism. she likes it when people know it. >> autism? what's autism? >> well, for julia it means she might not answer you right away. >> julia doesn't say a lot. >> that's right. and she may not do what you would expect like give you a high five. >> yeah, she does things just a
12:01 pm
little differently and a julia sort of way. >> oh, okay. >> and she's a lot of fun! >> yeah! julia likes being with her friends and she loves to play, too. >> play, play, play! >> you want to play now, julia? >> play, play, play! >> we can all play together. >> that's a great idea. >> me, too, can i play? >> sure, big bird. what should we play? >> how about tag? [ laughing ] >> i think that's a yes. >> i can't believe you found that! that's so magical. hey miss holly? >> yes, miss abby? >> would you like to meet julia? i found her? >> you did? >> yes, i did! >> i have been waiting for so long to meet her. >> okay, this is happening. [ laughter ] julia! julia, you can come out now!
12:02 pm
here she is! [ laughing ] >> hi, hi, julia. [ laughing ] >> well, you know, miss holly when she won't say hi right away or answer right away, that doesn't mean she's not happy to be here i know she's happy because she likes to jump when she's happy. >> excited! excited! excited! >> i told you. >> well, we're also so excited that you're here because we've heard so much about you, julia. we'd love to learn more about you. tell us the things that you like to do. >> um -- >> oh, well, as you can see she loves her little bunny fluffster. she likes to pet him. >> fluffster. >> he looks so cuddly and soft. >> and you know what? julia loves to be around people, miss holly, she likes to make friends. >> julia, who are some of your
12:03 pm
friends? >> friends? >> friends. elmo. >> yup. >> oh, well, he's everybody's friend. >> big bird. >> big bird. you've got to love big bird. >> abby! >> aww! >> around you know what? we like to play tickle, too, and tag and paint. >> tickle? tickle! tickle! tickle! >> oh, boy, see, we have a lot in common. >> you do and it's so great. i see you both have a lot in common yet you're both different. >> yeah, but you know what, miss holly? we're all different anyway, all our friends. like elmo's a monster, big bird's a bird, i'm a fairy, you're a pretty lady. [ laughter ] and julia's a kid. so we're all friends, though. >> that's right, that's right, we are all friends and i'm so glad you're friends and thank
12:04 pm
you so much for being here today. i'm so star struck. you don't even understand. >> oh, you're so sweet. hugs, miss holly. >> and kisses. >> one more, the other side, i'm from l.a. [ laughter ] >> so julia and i are going to go play while you share your story. >> play? play! play! play. >> thanks for being here, everybody and thanks for you being so amazing. >> you are amazing, too, abby. and julia, you are amazing, thank you so much for being here. >> you want to play? >> play! play! play! >> give it up for julia and abby. [ applause ] that's a moment, guys, can i just add a super-duper quick story that's relevant? you mentioned shafs on "sesame street," i did have one appearance, my father didn't want me to be on because he didn't want me to be a show biz kid. see how that turned out?
12:05 pm
[ laughter ] but he let me come on once, i had one line and i blew my one line. i was supposed to say "hi gordon." but i kept saying "hi daddy." so i just got to walk down the street holding big bird's hand so maybe one day sherrie i'll get to make up for that. i'm still not over it 40 something years later. well, now i'm excited to introduce dr. bruno anthony the leader of the research team whose work brings us together today. dr. anthony is the deputy director of the center of for child and human development and the vice chair of the department of pediatrics at georgetown university. his research interests range from children's mental health services to development psychopathology to autism spectrum disorders. and dr. anthony received a national institute of mental health career development award in mental health services and since that time he has focused his work on interventions for children with behavioral health and development challenges so
12:06 pm
we're very glad he is here today to present his preliminary findings regarding "sesame street" and autism see amazing in all children. dr. anthony? [ applause ] >> thanks, holly. it's hard to follow julia and abby but i'll try to do my best. i'm really proud to have been involved with working with "sesame street" on the evaluation of this important initiative and i really want to recognize the hard work of my colleagues, many of them who are in the audience today from the georgetown center for child and human development and are great collaborators at the center for autism spectrum disorder at children's national health syste system. so our goal in dividing this evaluation was three-fold. we wanted to know how did parents feel about the web site
12:07 pm
and the materials and its presentation and was it useful. second we wanted to know whether exposure to the materials increased knowledge and acceptance of asd. we ant waltzed to find o ee eedd to know whether reviewing the materials led to an increase in hopefulness for parents with asd children with greater engagement in the community and feelings of increased parenting competence and less parenting strain. so this slide shows -- outlines the general procedures of the study and first we want to appreciate the more than 1,000 parents of asd children and non-asd children who participated in this evaluation. of those thousand that completed
12:08 pm
the baseline -- and all this work was through an online survey -- about half then completed the follow-up one week later and almost 200 parents of asd children completed the one-month follow-up. so here's the goal one. what were the reactions to the web site content? overwhelmingly parents view the web site as engaging, informative and useful and this graph shows the high percentage of parents who agree that the materials made facts accessible, provided a better understanding of autism than they had before and almost 90% of parents felt they would recommend the site to parents of asd children. also, although each component of the web site was rated as highly appealing parents in general found the routine cards most
12:09 pm
helpful. these are the cards designed to foster positive child behaviors by teaching parents how to simplify everyday activities and help children manage common situations that can be challenging for all children but especially for asd children so this is the quote from one of the -- we lelicited comments frm parents and this is the creative way parents used these materials. this parent used the cards putting them on a poster board, printing them out and putting them on a poster board. parents also reported they really enjoyed the videos showing asd children and their families and you can see from this quote that the videos
12:10 pm
created greater acceptance in another child about his friend, the six-year-old nephew. so, again, these comments were really quite informative besides the actual data. but here is the -- sorry. so now let's see the amazing, amazing results that we've been able to compile. so first of all what changes were seen in parents of non-asd children? so we looked at two things, knowledge and acceptance and to gauge knowledge we have parents answer questions about asd, link to the content on see amazing. these questions asked about things that can often be more difficult for asd children as well as popular myths about autism. but we also wanted to know about acceptance so parents watched a
12:11 pm
short video of an asd child and answered questions that assess the level of comfort they would have if they were interacting with the child in the video so the questions would be like the child in the video makes me uneasy or the child in the video is totally different from other kids. parents rated those but you can see after viewing the web site parents of non-asd children showed significant increases in their knowledge about asd but more important in some ways their feelings of acceptance of asd children. half the parents showed increases in these measures now knees slides show some of the most powerful results, changes reported by parents of asd children. first the survey asked about parents' comfort with including their asd child in community activities. parents were asked how much they agreed with questions like "i'm comfortable explaining to other parents how to best include my
12:12 pm
child." or "because of my child's behaviors i've cut down on visits with my friends and relatives." as you can see, more than half of the parents felt more hopeful about involving their asd child in the community one month after exposure to the web site parents were also asked to rate how much their child's behavior resulted in parenting strain, such as feelings of worry or tiredness or unhappiness. a majority of parents reported feeling less strain related to raising their asd child at follow-up one month after viewing the materials finally, scores reflecting parenting competence. their feelings of confidence in general parenting behaviors increased significantly from baseline to follow up.
12:13 pm
and it's important to note that exposure to the web site seemed most beneficial for those parents reporting the highest level of parenting strain so this figure shows that highly stressed parents showed large reductions in scores reflecting feelings of stigma, feelings of embarrassment or sadness over their child's behavior but even more striking there was a very large increase in parents' community engagement score, the likelihood of getting involved in community activities with their child. so often -- final thoughts -- searching for support iive and accurate information has been a risky prospect for those who want to know about asd. the first search can often return a deluge of
12:14 pm
misinformation, frightening statistics and terrible predictions for the future of asd individuals. but see amazing focuses on the gifts of asd, appropriate services and supports and positive information so our preliminary findings show that that focus can help a parent or other people work to reduce biases and stigma, increase acceptance and inclusion empower asd children with knowledge and positive information about themselves amidst many negative messages. so we're looking forward to new ways to watch sesame workshop produce new ways to increase the range and impact of the see amazing initiative and we feel very privilege to have worked so far with them. thank you. [ applause ]
12:15 pm
>> i'm preempting for a second here. i want to introduce one guest and that's congressman chris smith. when you heard from congressman doyle earlier you heard that it was congressman smith who co-chair co-chairs and co-founded the autism caucus. congressman smith is a senior member of the foreign affairs committee but most of all we want to thank you for your leadership on the autism initiative and taking the time out to join us today. [ applause ] >> thank you, i'll be brief but i want to thank you for -- sesame workshop for its enlightened and i think transformational initiative that is going to help more and more young people, their parents and really this country and, thankfully, the world, too, because this will be global, i believe over time to understand those with asd, their families
12:16 pm
and with julia as a muppet to brings to life the daily challenges that a child with asd faces i think it will have a really huge impact on the community. i've authored three laws on autism. the most recent is autism cares and besides providing $1.3 billion for cdc, nih and hrsa, all important aspects, it also provided for a study about the 50,000 young people who matriculate from minor status to adulthood every year and what are we doing to be prepared for that? we also asked and got the second installment of a gao study as to, again, that same population, that same demographic this kind of initiative and the georgetown study which i read the executive summary which i think is
12:17 pm
outstanding just providing the worth in changing communities, changing both parents and non- -- parents of non-asd children the attitudes, the behavioral change, the understanding. that will not only change every community, every household in america but it will also provide a climate where more effective legislation can go forward at the state and federal level. our next big challenge is the services bill. that is why we did the autism cares, we want to continue the good studies going on in nih and the prevalence and surveillance studies by cdc but also to figure out what do we do next on every category from housing to education to continuing education to employment opportunities, how a police department ought to deal with someone on the spectrum, particularly if they're severely autistic. all of those challenges we have
12:18 pm
a blueprint from gao and we're awaiting it from the administration pursuant to that law. but this kind of effort and "sesame street," which is like the gold standard for all of us, my kids grew up watching "sesame street" just has such a positive impact on attitudes and understanding so thank you again. the georgetown study gives proof and backing to the great work you've done and it's a privilege to say thank you for your leadership [ applause ] >> okay, well, with i was over there doing social media and, of course, my periscope jumped and -- social media is a lot.
12:19 pm
but i got it done. hang on one s.e.c. so we're going to put together a really amazing panel and i'm so excited to introduce you to our panelist so first we're going to have -- our esteemed members, you're all going to be involved in a very stimulating conversation. dr. anthony, your findings just had me gasping. just hearing some of the things that you said as an autism mom, thank you so much for doing this work. so laura anthony ph.d. specializes in the assessment and treatment of children and teens with autism spectrum disorders and their families. her current research focused on developing classroom strategies to help children with asd learn cognitive and behavioral flexibility. dr. anthony received her ph.d. in clinical and developmental psychology at the university of illinois at chicago and did her
12:20 pm
training in child psychology at the university of maryland medical system. she was on the faculty at maryland for eight years and happen with children's national health system since 2007 so welcome laura anthony. [ applause ] come on up. julia bascombe is the executive director at the autistic self-advocacy network. she did work in her home state of new hampshire where she served on the development disabilities council and co-led an interagency team to revitalize self-advocacy within the state. julia edited "loud hands, autistic people speaking" an anthology of writings by autistic people and currently serves on the disability equality index advisory board.
12:21 pm
all right. the national disability advisory council and the board of advanced class inc. i got it out. julia, come on up. [ applause ] give her a round of applause. dr. jeanette betancourt is the senior vice president for the u.s. social impact at sesame workshop where she oversees community and family engagement initiatives that engage children, families, caregivers and educators with research-based resources designed to meet the needs of typically underserved communities. she has directed "sesame street" initiatives in areas such as healthy habits, early learning basics, military families, transitions, grief, incarceration of a parent and, of course, autism. welcome dr. betancourt. [ applause ] welcome everyone. i'm going to shift over here.
12:22 pm
i'm so excited to be here with you all. so first of all let's talk about dr. anthony's findings. what do these results mean? i know how i felt about them as an autism mom but speak to what the results mean and why is increasing knowledge and acceptance about autism so very important? >> i think knowledge only gets you so far, actually and that is not the finding that i'm most excited about. i'm most excited about the increase in acceptance. particularly with the families who don't have a child with autism. because i really feel like that is where we need to have changes in our community, our attitudes, our beliefs so that we can all be together, we can all see
12:23 pm
amazing, of course and our friends with autism and our colleagues with autism are able to share their gifts with us, and they have many. >> absolutely, absolutely. julia, what do you think? what are some of the reasons wipe this information is so crucial and valuable for right now? >> i think in a lot of ways this data was exciting because it validated what self-advocates and people on the spectrum have been saying for a long time, that knowledge isn't enough in and of itself, you need to focus on increasing inclusion and increasing acceptance and that when you provide -- i liked how it was broken down, when you provide positive stories and accurate information and talk about strengths and appropriate supports and so on and so forth that has that impact and that tangibly increases acceptance and increases inclusion along with that. i wanted to just say, autistic people experienced a drastically
12:24 pm
increased rate of bullying and isolation and anxiety and depression and i know this is a "sesame street" event but as a result of that the suicide rate is nine times higher in my community so being able to see these kind of interventions can make a difference and increase that acceptance and conclusion that the change that trajectory is a huge deal. >> and dr. betancourt, how are you making sure to reach families with kids with autism and the families without kids with autism with these resources? we talked about how important it is for those who don't have children on the spectrum to understand our kids. how are we reaching out to them? >> exactly as we're talking right now. the whole effort is inclusion. these resources are the voices that we've heard so part of what we're hearing now in terms of impact research came from what we call our formative research.
12:25 pm
in other words we went out, had experts such as here but also heard from the voices of families who had children with autism as well as those that had non-autistic children so we feel very strongly this is representing that scope and we're working with many partnerships both that are directly servicing families and as well as those that are inclusion environments so our call to all of you as we're here is to help us to continue to share these resources that are so easily accessible. >> one of the things, just interjecting, that my son said to me, he's 19 now, a young man, he said "i wish i had a julia." because in school i was the one that had to come advocate and tell the parents and it was really educating the parents. i was talking about it with dr. anthony. i had to teach the parents so much and the kids knew a little bit more about autism than the parents did.
12:26 pm
when i hear r.j. say "i wish i had a julia" because he did experience a lot of bullying and school was tough for him and socializing was tough. imagine if he's in school and then children who were watching julia get to hear and see elmo and abbey and big bird advocate for julia. that's a pretty powerful cool. >> it's the context that we're seeing. i think what we heard from the results, right? this idea of feeling i'm not alonement it's suddenly seeing myself and in such a positive manner and often we've heard that what you hear is the negative side and here we're fostering commonalties and also what all children share. >> i also want to just say that i'm so glad that you're involved, julia. i feel like sesame workshop really brought together a diverse group of people and
12:27 pm
organizations to cover all sides because often sometimes -- another thing i get my cues from my son, he says he doesn't hear from people with autism enough. >> i think that's very true. even when we're talking about the initiative today we talk about families and the kids who aren't autistic but what's sticking with me is the anecdote that i think sherrie related about the mother who used the book to explain autism to her four-year-old and the four-year-old said "so i'm amazing." so i think what often gets -- obviously the perspective of autistic people are left out or it's assume wed don't have one and the reality is that across the spectrum you hear over and over that people figure out pretty early that there's something different about us. we know we get treated differently and we have different experiences and if someone doesn't explain why the only conclusion a five-year-old can come to is that there's something wrong with me, that i'm bad, i'm not doing this right, this is my fault and that can lead to some pretty
12:28 pm
difficult experiences for a lot of people. a lot of self-advocates talk about the power of knowing why. when you have that word -- i know we like too say labels go on soup cans not people but that word can be a way to see that it's not -- you're not bad, you're not broken, there's a reason. when you have that reason, everything clicks into place. >> i think one of the other things you talk eed about -- i speak about my son who's 19 and education and getting a job. eventually these young people that julia will impact have to grow up and work and be self-advocates and all of that so this core understanding of what autism really is is just so powerful as they matriculate through life so when corporations look to hire our children on the sprek trum it's
12:29 pm
amazing how much stigma that julia is going to eradicate just by her appearance on this iconic show so it's pretty phenomenal. what else do you think will be the impact -- long listing impact of julia's appearance on "sesame street"? >> well i think you're bringing up a great point about inclusion but the results that we were talking about today, that was just from people looking at a web site, right? that's a very small dose of exposure and if we want to reach the broad community how do we get parents to that web site to get that information? that's a hard thing to do? right? but having julia on "sesame street" means -- who doesn't watch "sesame street"? >> i don't know. [ laughter ] >> everybody watches "sesame street" so she is then a part of
12:30 pm
the community and then if there was a way that every young autistic kid could have not only be able to see julia on tv but have the see amazing book at home and a julia doll at home because julia can be a symbol for everything that is positive about autism and that's something for kids to hold on to that makes them feel amazing. >> one of the other elements of -- we talked earlier, everyone knows "sesame street" is about diversity and that's something that's synonymous with "sesame street" but going back again to 1969 when my father first told me about the show it was ground breaking to have children of all colors and backgrounds to be represented. to me having julia on with her autism is just another way to include and to have more -- even more diversity on "sesame street."
12:31 pm
do you all agree with me? >> absolutely. >> dr. betancourt? >> it's -- yes, you're absolutely right. we've had an incredible history of diversity and looking at it in terms of different abilities, different racial groups, different languages. but most importantly, we're also showing that in everyday moments in life, like we all experience. and that's one of our key messages. it's really inclusion is not difficult if you have the understanding of acceptance. and we hope that we're always constantly modeling that for everyone big and small. >> the other piece is hope. one of the things a lot of people get -- and our family did -- when we got our autism diagnosis, we didn't have a real hopeful moment then. we were told everything he would never be able to do. we call it the never day because it was just such a moment.
12:32 pm
he's been able to tick a lot of those off of his list and i'm so proud of him and he has a job now. it's pretty amazing but i often wonder if i had had a vehicle like "sesame street" how much more hope i would have had earlier because for parents getting this diagnosis it can be devastating and what you don't want to be is hopeless. i feel like this initiative and just the whole concept of see amazing in all children because that's also an inclusive slogan will give parents hope, do you agree. laura, do you think it will give more parents hope and help us in our parenting and in our day to day lives. >> i hope so and i think to just add on to what julia had said a few mince ago if parents feel more hopeful, less stigma, if they are less worried about their kids, if they feel like
12:33 pm
they know how to get services their kids need, how to advocate for their kids and they can convey a positive message to their kids i think that is not only going to help the parents, it's noting on going to help the community but also for the children and what bruno was saying earlier about the amount of scary information on the internet, if you haven't done this, those of you in the audience, just google autism. >> no, don't do it. [ laughter ] so much -- hopefully today the first thing that comes up is julia. >> she's already trending. [ laughter [ laughter ] but a week ago you would have seen things that make you feel like autism is a tragedy and those of us who know and love kids with autism know -- i'm not
12:34 pm
saying there are not difficult moments, and there are not things to advocate for but it's not a tragedy. >> no, it's not a tragedy but autism parents need help and they need support and as long as we have help and support in this forum. my favorite thing about julia is when big bird asks "what is autism?" and he says "for julia, it's this." because for those of you familiar with the autism community we've always say if you've met one kid with autism you've met one kid with autism. it's a wide spectrum. one other quick point i wanted to bring is up that in african-american and some other communities children of color get diagnosed a lot later than their typical peers in other communities so considering how diverse and how many children of
12:35 pm
color watch "sesame street" and parents, i believe this is going to help them get their children diagnosed and get them that early intervention that they need. that's really important as well. >> you know, that's an interesting point because this is truly the entirety of the initiative, see amazing in all children and we made a very specific effort to be as comprehensive in levels of impact. racial and ethnic diversity, different settings and also gender so we saw boys and girls and now it's also available in spanish so you have everything that we can do to bring as much awareness as we can. >> you're doing a terrific job. is there anything else anyone wants to add before we open up for q&a questions. >> can i just say about the spanish resources? i'm not sure that i knew that. [ laughter ] >> it's in spanish. >> breaking news. so i think that what's important
12:36 pm
about that is when you said that -- about communities of color and hispanic and latino kids are actually diagnosed the latest of any of our kids so that's such great news. >> and not only that but just really keeping it real on "sesame street" we -- we -- i'll speak for my african-american community we tend to really be scared of anything that has to do with the brain. the stigma in our community can be really, really deep and so because of that we're often scared to diagnose our kids and we're scared of it and because of that the diagnosis is later and then intervention doesn't come so i feel like this is going to help get more kids diagnosed and help the parents as well process this so with thattic we have a couple questions. should we take a couple questions? anybody want to ask a question
12:37 pm
from the audience? we have a microphone for you. >> my name is sara and i am a communications person at the association of university centers on disabilities which is a bunch of interdisciplinary research centers all over the u.s. that do research about quality of life for people with intellectual and development disabilities, i'm also an autistic self-advocate and i wanted to ask would julia ever have the opportunity to meet julia that is -- i know i personally would love to see julia the muppet interact with julia who's such an important figure in our community. [ laughter ] not that i -- i'm not writing for you, obviously. [ laughter ] but i just -- i don't know, i'd love to see julia have further adventures where she interacts with autistic adults just
12:38 pm
because -- it's just so meani meaningful to me to see someone like julia. what are any chance of that, maybe? >> what's exciting is that julia -- and by coincidence the name happened to be julia over time -- has been part of our process since the very beginning so keep in mind that what we did is we had 14 organizations part patriots in every step of the way and julia actually was so helpful in so many points from not only the way the whole initiative and its messages were but also she went over the design of julia, the script of julia in different ways so i think as we go forward you'll see things happening and that possibility won't be ruled out. thank you. >> any other questions?
12:39 pm
>> i'm liz weintraub with the association for university centers on disabilities as well. and my question is going perfectly around on "sesame street" i know in the late '80s or the early '90s you talked about people with down syndrome and -- because i had a friend on the show with down syndrome, with the label of down syndrome, excuse me. and my question is do you think that "sesame street" would ever talk about bringing other disabilities like cp or other kinds of issues?
12:40 pm
>> i can answer that ch. i think you heard that we have a history of representing different abilities and also in that disabilityies and we have actually shown a diversity in different challenges. everything as you mentioned from cognitive challenges as well as we have had cerebral palsy as well as dancers who participated both with physical detectives and also invisibility disabilities so if we go over the history of "sesame street" you'll see such a broad range of representation and, again, always an inclusion model of different disabilities so it's very exciting. >> i think we had another -- one more question over here. >> hello, my name is abila and i'm the mother of children on
12:41 pm
the autism spectrum as well as a pediatrician so i'm grateful to be here and thank you for raising the awareness about africans and latinos, that's the populations i serve. i have two questions. the first is how do we get this book in bull? as we do diagnostics on our children i think it's very important to disseminate this information right away and the second is what is the future for research in terms of further impact? because i can see something like this to be able to do peer sensitive the in the school system because when we think about our children it is really having their peers be understanding. that's really going to be the major impact as they get older and feel more empowered. >> maybe i'll tackle the first question in terms of accessibility of resources and particularly not only the story book but the whole scope. we did quite a bit of research on how to deliver this content
12:42 pm
and we know that in the context of this community having easily accessible digital content that goes with assisted devices and other means is very useful so everything is available in two ways, at sesaay sesamestreet.orm and this wonderful story book that has certain abilities in terms of turning off sound, putting on sound, bigger buttons. we also have it as an yap so you can download it. again that's sesamestreet.org/autism and it's available on kindle, apple so on and so forth. in terms of looking at this it's how -- the way we designed the resources with everyone who's here in mind families themselves
12:43 pm
as well as provider systems that can integrate these materials into what they're doing but i'll turn it over to my colleagues on the research because we have some thoughts, too, but i would love to hear theirs, too? >> i think we -- we have a lot of thoughts about next steps and especially now that she's on the show and we can have a much -- i want to call it a dose, right? a much larger dose of julia and the message of acceptance and seeing amazing in all kids. i would love to look at what happens now and particularly from the child perspective which we are not able to get only when it's online. if i worked at "sesame street" -- [ laughter ] -- which i don't but they're not going to turn my microphone off now that i started that sentence
12:44 pm
i would make the paper books and some great julia dolls and even the routine cards, which are incredibly popular available in paper for purchase and distribution and then the proceeds could go to organizations that you choose and maybe a little bit of it could go to further research. you know, i think -- i think i just want to -- i want to say again even with just looking at the web site, acceptance changed and most of our anti-stigma campaigns or knowledge campaigns or increasing awareness they might increase knowledge a little bit but they usually don't increase acceptance. there's something very special about "sesame street." i mean, of course.
12:45 pm
and julia. there's something very unique and i would like to see julia go big. >> go big or go home, right? >> i can see you haven't thought this out at all. [ laughter ] but i can see this just came up in your mind. >> laura, julia, jeanette, thank you so much. thank you to everyone that you -- yes, of course. of course. one last one. >> my name is tom, i'm sorry to hold up your time but i'm with autism speaks, volunteer for autism speaks and i'm also a self-advocate who works in baltimore city through an organization called pathfinders for autism just gone around explaining my side of the story and my question to you is do you
12:46 pm
think julia -- the muppet, not the panelist -- [ laughter ] julia the muppet, if you met one person with autism you met one person with autism, i know you covered that, but do you think people who are more pim presentationable, i.e., like little kids that watch "sesame street," do you think if they see julia they're going to be like, "oh, everyone with autism acts like this"? is that a concern or is that something we just are not worrying about? >> that's a good question. >> quite a bit has gone into how this is representing and designed and if you here -- if you listen, we even heard it here that it's julia's own unique autism, her way of doing things. i think as we know in any kind of diversity, the focus is you're not saying this is the one and only so we made very,
12:47 pm
very strong emphasis on indicating to julia, julia is a special little girl just as any little girl is and her autism is particular to her. so we feel that that's a key message in the way of relating both to children and adults. >> if i could just add i think, again, the challenge of a single story is the challenge of 100 julias which i would be fine with. so another thing that can be done is this doesn't have to be the only story, other shows, other projects should be doing that as well. >> and i think there's going to be affect -- a "sesame street" affect where people are going to start presenting more representations of what autism looks like in their communities and i think that's powerful. >> very inspiring. >> she's inspiring and will inspire people to go outside of
12:48 pm
their circles to see what autism is in their community so that's important. we are towards the end of our program. thank you, sherrie, for inviting me. this is a full circle moment. for those of you who missed it, many i dad was on "sesame street" in 1969, he was the first guy to walk out and say "hi, i'm gordon, welcome to "sesame street."" so this is a completely full circle moment for me. he passed away 14 years ago and the fact that there's julia advocating for his grandson r.j. who he only got to meet for a while is love li lovely so than sesame workshop, and right now i'm going to throw to a video for you to enjoy. have a great afternoon. [ applause ] >> hey! >> oh, sure, we can play some more! >> oh, oh can i play with you
12:49 pm
guys? >> elmo, too? >> well, of course, we can all be friends. >> yeah! ♪ we all have our own special things that make us ♪ who we are and everyone's important ♪ we can all shine like a star, yeah, we may ♪ all be different but that's something that's worth phrasing ♪ it's who we are and what we do that makes us each amazing ♪ we can all be friends, we can all be friends ♪ it feels a little better when we all play together ♪ we can all be friends >> there's another thing you have in common, big bird. julia loves to sing. >> oh, yeah! ♪ we can all be friends, we can all be friends ♪ it feels a little better when
12:50 pm
we all play together ♪ we can all be friends >> let's play tag. >> boeitag! >> so i want to thank everyone and invite anyone to stay to please join us for lunch. we will have characters in the back of julia and have photos if you like and was holly not a great choice for moderator? [ applause ] and our unbelievable panelists, thank you all so much. oh, anita's here. see, we have one more surprise guest and what a perfect way to end. representative, the highest ranking woman, the highest ranking member of appropriations committee from the great state of new york. who has been a dear friend of
12:51 pm
"sesame street" for so many years. >> and a wonderful friend of my dear friend sherry. >> thank you. >> i'm just going to say a quick word because as ranking member on appropriations, i've been particularly active for many, many years on the committee on labor, health, human services, education. and we've got to increase finding money for the nih and we have to figure out why the numbers for autism, youngsters, keep increasing and increasing. and awareness and education and focusing on lifestyles is so important to this effort so i'm sorry i missed that film but i'm with you and a great supporter and i march in the autism walk every year. and what is kind of really an eye opener for all of us is

77 Views

info Stream Only

Uploaded by TV Archive on