All the Lonely People Follow Ben, a young adult learning new social skills in a group setting Ben: I didn’t have any friends in the last decade. I grew up with so much confusion. If only they’d look closer, if only the people that don’t like being friends could just look closer, they’d find there was so much more to me, so many good qualities. Visual: Navigating the Social World with Autism Erland: Here you are, Ben. Ben: July 4th. O.K., smile picture nothing, nothing! Visual: Ben was diagnosed with Asperger’s Syndrome in 1998. He was 12 years old. Visual: The diagnosis did not exist until 1994. Erland Anderson Ben’s Father: We first noticed that something was a bit different about Ben when he didn’t engage so much with the other kids. He was sort of in his own world. When he started school we had nothing but trouble. They tried to do different accommodations, but nothing really seemed to work. Susan Rubinyi Ben’s Mother: We were not cognizant in the small Oregon town of our rights as parents that our child should have a public school education, as a result of which we became involuntary home schoolers. Erland: Then he developed an obsession with leaves, and he was off into the trees, and he claimed that it was his job to remove all the yellow and red leaves before the wind blew them down in the fall. We didn’t know what that was. We did finally consult a psychiatrist about that, who thought it might be obsessive-compulsive. But when it actually led to his hospitalization, that is when they sent him to UCLA and that’s when they determined it was a stimulative behavior. It was an autistic behavior. We didn’t really get an early intervention. His intervention was at twelve, but the early intervention only goes up until Special Education ends, and then what happens when they become an adult? Ben: When I was a kid, I had all these babysitters. I had all these friends, playmates. It felt good to be liked just by everyone, even strangers you, I met on the street. Everyone liked me. Why is it when I was young that everyone just naturally loved me, and now why isn’t it that way? Visual: Jane & Terry Semel Institute For Neuroscience & Human Behavior UCLA PEERS Program September 26, 1st Meeting Dr. Laugeson: Welcome, everybody. My name is Dr. Liz Laugeson and I’m the Director of the PEERS Program, and I’m not sure how much you guys know about PEERS but initially it started out as a social skills program for teenagers, um, with autism spectrum disorders, and we’ve now developed this Young Adult Program which is why you’re all here. And so you know that the purpose of PEERS is really to kind of learn to make and keep friends and develop meaningful relationships. So we would love to just take a moment and find out about who all of you are. Ben: Hello, I’m Ben. I used to go to Musician’s Institute. I went for about five to six years. I’m twenty-four years old, almost twenty-five, and I’m glad to be here in the group before I get too old so I can have fun in my twenties with friends. Dr. Elizabeth Laugeson Director, UCLA PEERS Clinic: There are so many challenges that adults on the autism spectrum face, but I think that the social challenges tend to be perhaps the most significant and sometimes the most impairing. They tend to have very few friends. They tend to not be involved in romantic relationships. They also have difficulty obtaining and maintaining employment, and as a result they tend to be pretty isolated and experience actually quite a bit of loneliness. Deborah Portnoy Ben’s Life Skills Coach: We are seeing now with Ben this huge mushrooming population of young people without very many good programs to transition them from Special Ed or even regular education into the real world. Deborah Portnoy: Last year remember we made a whole big schedule which every day or at least every week we were hitting all these things and working on all these things, and that seems kind of overwhelming, right? Never really got off the ground that schedule to the, to the extent that, you know, all of these goals were being at some time worked on. So we scaled it back, right? Your main goals right now have been music and then your, your PEERS Program and the social aspects of what you want from life. Dr. Laugeson: So we’re going to start with talking about phone calls. Last rule that I want to talk about relates to something that’s called, ‘cold calling.’ ‘Cold calling’ is when you call somebody on the phone that never gave you permission. Ben: Nine years ago I was calling my old, um, babysitters, trying to see if we could hang out. And it was strange to them, and I didn’t get why it was strange that I was calling. Erland: Occasionally, you know, he realizes he’s different and that he’s, he’s missed out. He missed out on high school. Then he wants to go back and relive it and of course he can’t. He has to move forward. Deborah Portnoy: Having, um, the desire to interact socially, Ben certainly has that, and he’s going to need to be coached in a way that supports people not being put off by that. Dr. Laugeson: So much better slipping into the conversation this time, Ben, but there’s something we still need to work on when you join the conversation. Remember how we talked about that when we first join a conversation we’re still sort of a visitor? Ben: Yeah. Dr. Laugeson: Right. So what do we want to do? Do we want to talk more or less? Ben: Less. Dr. Laugeson: That’s what we need to work on, Ben. Ben: Part of my interruption problem is because I think very fast. Susan: When they tell you in pairs not to interrupt and not to give lectures, what thought went through my mind? Uh, oh. Good luck! (laughing with Ben) Mauricio: So . . . Ben: Six times two is twelve. Mauricio: Let’s put a [ ] over what? Erland: Mauricio is Ben’s day-aide. Mauricio was a student at Musician’s Institute who then, and they required Ben to have an aide while he was in the school; he remains Ben’s aide now because he is trying to get him through the GED as well as help him with his music career. Mauricio: So let’s just go follow the song. Just do your part, so we can start doing, playing the whole song. Ben: What time is it? Mauricio: It’s seven-thirty. Ben, singing: And why I sing that life can be so cruel. I go insane where I cannot follow the rules. Mauricio D. Ortiz Ben’s Day Aide: He wants to make a big change in this world, expressing his ideas in his music, and, uh, he want to feel like, I guess like normal, like everyone. Mauricio: You told me once that PEERS is different from the other programs you’ve been through? Ben: Oh, yeah. Mauricio: What’s different about this program? Ben: Well, just help explain things better and make things clearer. They’re translating languages into the Asperger’s planet mindset. They’re trying to translate the social world’s neurotypical world here to help make sense, because it’s like, it’s like being blind or deaf where you can’t see or hear or understand things. Dr. Laugeson: So what was it that you wanted to talk about? Ben: You didn’t help make sense about why there’s privacy settings on Facebook. PEERS Program October 17 Dr. Laugeson: Well, do you think that it’s ever possible that people might not want to share their personal information with people they don’t know? Ben: But they try to get you, encourage you to do it. Dr. Laugeson: Do you have to that just ’cause they encourage you? Ben: No, but why are they, if their intentions are good, why are they encouraging people to do unsmart things? Dr. Laugeson: Well, I’m not sure. What is the question that they were asking you that you were getting too personal about? Ben: They ask, ‘What’s on your mind?’ And then you just type it up. Dr. Laugeson: So saying ‘what’s on your mind’ is a pretty vague, kind of, you know, nebulous sort of question. It could mean anything. Ben: Well, but that’s dangerous for Asperger’s people. Dr. Laugeson: I know. Ben: ’ Cause they’re going to do it. Deborah Portnoy: He takes the world really, very literally, uh, so sometimes, uh, helping him to understand someone’s intention behind the actual words that they say, uh, is necessary. Dr. Laugeson: So actually, uh, we think it’s probably a good idea to have some privacy settings, and there’s very good reasons for that, and it’s just so not everybody can access their information. Ben: Like where they work. I mean, there’s ways to find out on the Internet, but that doesn’t make it O.K. You have to get their permission first. Dr. Laugeson: Yeah, just because you find somebody’s address Online, does that give you permission to go over to their house and say hi? Ben: Oh, yeah. I did do that. Dr. Laugeson: Did you do that? Well, how did that go over? Ben: They were frightened. They called the police, almost. Dr. Laugeson: They were frightened. Yeah. So just like you have to control your feelings . . . Ben: You have to . . . Dr. Laugeson: You have to control your behavior, too, but instead, Ben, of going out and Googling everybody and trying to figure them all out through the Internet, there’s something else that you could do that’s not creepy. Ben: Get to know them. Dr. Laugeson: How do you do that? Ben: Meet them in an appropriate setting. Get to know them. Dr. Laugeson: How do you get to know them? What do you do? Ben: It’s like we, what we talked about, trading information and then having a reason to ask for their number, contact information. Dr. Laugeson: Exactly. Ben: That is the right way, appropriate way to do it. Dr. Laugeson: That’s the appropriate way to do it. Ben: Doing it through other means like that, even if you’re intentions are good, is not O.K. Dr. Laugeson: No, it’s not. And it could be really creepy and it might freak the person out. Right? Ben: That is a no-no. Dr. Laugeson: Yeah. Very good. Erland: Ben, do you need help with your stuff? Here, let me take your laundry and your . . . Ben: This is clean. Erland: What’s this clean stuff? O.K. You don’t, you don’t have to do laundry here this weekend, huh? Ben: No. Erland: How has PEERS helped you in all this? What is it that you now understand that you didn’t understand before? Ben: Well, it’s helped me realize, like why what I was doing was inappropriate, when I was calling people I barely knew that wouldn’t remember me and . . . Erland: Yeah. You were making lots of ‘cold calls.’ And you didn’t realize that you have to ease into things. You can’t just start off on whatever you’re interested in. The problem now is to avoid the impulse or repeat the impulse. Sometimes the impulses are, still overwhelm his understanding. PEERS Program December 19 Ben: I did have a little bit of regression, and this got me wondering, thinking. Yours is the best I’ve found, but then I thought to myself, ‘I wonder if PEERS is really helping?’ I called a girl up that I had class with at MI but hadn’t talked to for three years. And when I found out where she worked from Facebook Friends, that made her a little, it made her uncomfortable. Dr. Laugeson: Did you show up where she works? Ben: No, no, no. I called, but it made her uncomfortable because, well, she couldn’t, didn’t really remember me, and it was weird. Dr. Laugeson: So, I’m sorry, how did you contact her? Ben: Well, that’s the problem with Facebook, they try to get you to reveal where you work. Dr. Laugeson: O.K., so did you go to her work? Ben: No, I called her work. Dr. Laugeson: O.K., in terms of moving forward, what do we learn? Ben: Does that mean that . . . Dr. Laugeson: No, I’m asking you a question. What’s the lesson? Ben: Does this mean that this group is not working? Dr. Laugeson: Hang on a second and back up. What was the lesson? Ben: Think before you do anything. Dr. Laugeson: Learn from this, yeah. Exactly. Ben: Really think about it. Really think if it’s appropriate or a good idea. Dr. Laugeson: If you make mistakes, which happens sometimes, and maybe you get the sense that you freaked somebody out, kind of creeped them out, it’s your responsibility to fix that. Ben: But I’ll need to, the tools of what to say. Dr. Laugeson: O.K., so let’s talk about that. What would you say? Right now. You just creeped me out. What are you going to do to fix that? Ben: I’m sorry I creeped you out. I have a condition known as Asperger’s Syndrome, which is like, it’s related to high-functioning autism and I, it prevents me from always understanding the social boundaries. I didn’t mean to creep you out. I just have Asperger’s. Dr. Laugeson: Everyone, are we agreed? That’s perfect! Bravo!! Ben: So now, I will be the one to get myself out. Dr. Laugeson: That’s the way to do it! It’s all about what you’re going to do next time. Ben: I had this idea that I wanted people to just be comfortable and know and just accept me the way I am and try to understand that I, it doesn’t mean I’m a bad person. But little did I know that when you’re meeting people, people don’t know that. They judge from the way it looks outside. Deborah Portnoy: I think PEERS is going to have given you general guidelines, but really how those play out is going to be up to you. But moving forward is the thing you have to do. Can I ask you about Jenny? Do you like Jenny? Ben: Yeah. Deborah Portnoy: Yeah. Do you think she likes you? Ben: Yeah. Ben: Jenny. Jen is an exceptional person from MI who talked about wanting to jam with me, and so we got contact info and then we, um, our friendship grew, grew from there that way. Susan: When we were talking about people it might be interesting to invite over for a get together, he decided to invite her. Ben: Over the holiday break, she and I got together, and it was like, ‘Man, I wish I was less shy,’ but then I thought to myself, ‘Well, but I shouldn’t be hard on myself. Of course I’m going to feel a little shy ’cause I’m just starting a new thing now. As far as getting together with friends, I’m starting new and I’m restarting and of course I’ll feel a little shy ’cause I want to do things right.’ Wish me luck. Susan: Good luck. Ben, on phone: Hey, Jenny, it’s going great. Um, it was great getting together last time, man. So, um, yeah, it was really great getting together and I’ve been thinking, um, how ’bout, would you be, that’s great that you want to learn some of the Beatles’ songs or Rolling Stones or classic rock stuff. So I was just thinking wouldn’t, of um, maybe getting together to jam ’em, so we could do them sometime at The Talking Stick? (laughing) Well, um, I’ll, um, give me a call or maybe I’ll call you later and, um, so, um, I gotta, I think I’ll get back to my practicing now, huh, huh. Talk to you soon. Bye for now. (laughing as hangs up) Second of February. Susan: You did great. Ben: I did the best I could. Susan: You did great. Visual: February 2 Ben: There she is! Ben: What’s taking so long? Ben: Hello, Jenny! How’ve you been? Jenny: Hello, Ben! Ben: And then that’s when that part comes in. Jenny: Oh, yeah, the crazy part. Ben: I can’t do that part. I meant to ask you, Jenny, what kind of TV shows do you like? Jenny: Oh, I like Alec, comedies like Family Guy. Ben: What about some of what I still like, like, um, uh, Winnie the Pooh? Jenny: Oh, my Gosh, it’s been years since I’ve seen Winnie the Pooh but . . . Ben: Did you ever like to, when you were having fun, thought to go, ‘woo, who, who, who,’ like Tigger does? Jenny: Uh, huh, yeah, when I was a little kid, I used to pretend I was Tigger too. Ben: How ’bout Timon & Pumbaa? Did you ever see any episodes of that? Jenny: A long time ago, Ben. Ben: I like Aladdin, the series. The Genie’s cool. People always try to think of new ways to be cool, like that’s why sometimes with certain people or girls I used expressions like, ‘To get directly to the point, direct, to get directly to the point, berries, that is!’ That is, I try to, you know, use words like that ’cause they’re quite cool words. We all sometimes try to be cooler to be liked more. Jenny: Uh, huh. Ben: Does it work? Jenny: Oohh, I think just being yourself works, works the best for you. Ben: And not trying to be something you’re not? Jenny: Yes. Visual: THE TALKING STICK COFFEE LOUNGE Mauricio: His music is always going to be a, a social link and an outlet for him, and he’s been writing his own songs. Announcer: Now we have Mr. Ben Anderson. Ben: Hello, everybody. Tonight I have a partner, uh, who’s playing with me. It’s Ben and Jenny. My first song’s called ‘The American Dream.’ This is a political song. It’s about just what happened to that American Dream and those years of prosperity, and let’s hope the day comes back again. Ben, singing: I remember once there was a time when we didn’t live in as much hate as today. Back when we lived in the world of promise and opportunities were our ways. Visual: PEERS Program February 13, Graduation Visual: Congrats GRAD Dr. Laugeson: Welcome to our PEERS graduation. Um, we have come a long, long way. We know that PEERS is not easy, and we make you work really, really hard, and you guys have come every week faithfully and, and practiced all these skills, and we know that you’re going to continue to practice them. Ben: Tonight we’re only looking at positives, even though we acknowledge that it’s, that it may not be over. There may still be struggles. Dr. Laugeson: No, it’s definitely not over. Does everyone agree, this is not over? Just because the program, the group may be coming to an end doesn’t mean that, that this journey has ended. It’s just beginning. Ben: But you didn’t ask, you didn’t get around to asking us how we felt about graduating and getting our thoughts. Dr. Laugeson: Well, you haven’t graduated yet, so I’ll ask. Our final PEERS certificate goes to Ben! Yeah! Congratulations, Ben! Ben: Yes. (high fives) Yes. Yes. Ben: Why is it that often people who are young fall under this impression that getting this is going to make them successful or guarantee them success or make them invincible or immortal? Dr. Laugeson: But I think that it gives you, that tells you that you have some knowledge. Ben: But it doesn’t make you invincible or successful. Dr. Laugeson: But it doesn’t, no it doesn’t, you’re right. So you have this certificate now, so what are you going to do to make yourself successful? Ben: Continue to implement the choices you gave me, because you can give it to me, but if I don’t, I’ll still have the same failures. Dr. Laugeson: O.K., well you keep us posted on how you’re doing. I’m really, really proud of you, though. Ben: Yes. Deborah Portnoy: The safety nets always have to be there. It’s like it takes a village. Really, you cannot expect an individual on the spectrum to move past their challenges. They’ll always have challenges. But how they learn to cope, how happy, fulfilled they can be every day, ’cause they wake up and have a purpose and a reason to live, I think that should be more the focus. Ben: I don’t feel as down as I did last year. I feel more hopeful. Director & Producer Amy Teague Editor Michelle Fellner Cinematographer Chris Burgon Additional Camera Chris Freilich Adam Watson Andrew Jeric Alejandro Martinez Sound Addison Teague Johnny Karlsson Composer Tony Morales Original Songs Ben Anderson SPECIAL THANKS Ben Anderson Susan Rubinyi Erland Anderson Deborah Portnoy Mauricio D. Ortiz Elizabeth Laugeson Shannon Bates Lara Tucci UCLA PEERS Clinic Jenny Hedstrom The Talking Stick Lidia Magarian & Santa Monica Family YMCA The Edge Family The Lorant Family Paul Lerner