Autism: Film Shows Education Challenges For Young Adults And Families

Best Kept Secret is a film that follows a group of young adults with autism during their last year of high school. Host Michel Martin speaks with filmmaker Samantha Buck and Janet Mino, a special education teacher.

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MICHEL MARTIN, HOST:

I'm Michel Martin and this is TELL ME MORE from NPR News. We're going to move to a pressing issue back here in the U.S., focusing on a subject that we talk about often on this program, and that is education. You might have heard that President Obama has proposed a new way to rank colleges and universities that goes beyond test scores and how many kids are put on the waiting list. That's something the Washington Monthly has been doing for years now. So we'll talk to their editor-in-chief about what kinds of attributes put colleges at the top of their list.

First, though, we want to talk about a different kind of educational challenge. And if you think managing your teenager's transition from high school to college or a job is hard, consider the challenge for parents and students with autism. That's the subject of the new documentary "Best Kept Secret." It focuses on a class of students at John F. Kennedy High School in Newark, New Jersey as their teachers prepare them for the world beyond school. In this clip from the film, the parents of one student named Quran talk about their concerns about his future.

(SOUNDBITE OF DOCUMENTARY, "BEST KEPT SECRET")

B. KEY: My objective is for Quran to be able to not get lost, you know, just sit in a room and be isolated from everybody...

D. KEY: You know...

KEY: ...And up in one of them...

KEY: ...And end up in...

KEY: ...Institutions.

KEY: ...An institution...

KEY: Yeah.

KEY: ...Dealing with whatever.

KEY: The state. So we have to be in the best position, so that Quran can receive the best quality of life possible.

MARTIN: Joining us now is filmmaker Samantha Buck, and also with us is Janet Mino. She's a special education teacher at John F. Kennedy High School and she's featured in the documentary. Welcome to you both. Thank you both so much for joining us.

SAMANTHA BUCK: Thank you for having us.

JANET MINO: Thank you.

MARTIN: Samantha Buck, what is it that interested you? What is it that you think you were looking for as you started this film?

BUCK: I wanted to focus on older children on the spectrum rather than the younger children on the spectrum. Most of these films seem to be about cures and they all are wonderful and, you know, what causes it. So I was interested in adults and the inner city area, which is what led me to Newark.

MARTIN: Janet, could you tell us, though, for people - back up a little bit - for people who don't know, what is autism?

MINO: Autism is a disorder of the brain development. That's the terminology, but from my experience, autism is just a different way of thinking. People think that when they talking to children with autism or if they in the room with children with autism, that they don't understand or they don't know what they're talking about, but you'd be so surprised. So I think that with children that's on the spectrum, they don't want to necessary speak when they have nothing to say. When they want something or if they need something, they have a different way of communicating it if they're nonverbal, or if they're verbal, they say it.

MARTIN: Samantha, tell us about John F. Kennedy High School. Why is it called the best kept secret?

BUCK: When we were researching and trying to find a school in Newark's inner city, I Googled and I found JFK. And even some people in Newark didn't know about JFK. I've never been any place that felt so nonjudgmental and accepting in my life. And we're all jaded New York City filmmakers, so we went in there and kind of all of our New York City cynical selves kind of melted away pretty quickly in that environment. It really is - and I would say this about being in Mino's class and being around the guys in her class - they are so in the present and they are so accepting of whoever walks in the room that you stop judging and you start being very much in the moment with them.

MARTIN: One of the central questions or issues in the film is what happens to these young people because they are becoming adults. They are learning, you know, life skills. They're learning all the things that people would, you know, typically learn in school. But then the question becomes, you know, what happens next? I just want to play a short clip from the film, and this is where you, Janet, are in a discussion with the principal of JFK, and you've both visited just one of the adult facilities available to the students. And you're getting into kind of an intense discussion about whether it really - this is a place that you want your kids to go. Here it is.

(SOUNDBITE OF DOCUMENTARY, "BEST KEPT SECRET")

MINO: We've got to give them a life. It's up to us.

GLENDA JOHNSON-GREEN: No. That's what...

MINO: To me.

JOHNSON-GREEN: ...Depends...

MINO: This is just my...

JOHNSON-GREEN: I agree...

MINO: It's up to us...

JOHNSON-GREEN: I hear what you're saying.

MINO: ...To find them activities within, so they can have a full day...

JOHNSON-GREEN: That...

MINO: ...So when they go home...

JOHNSON-GREEN: That is not...

MINO: ...Of different activities, work where they got paid - things like...

JOHNSON-GREEN: That is not life after school. I...

MINO: It should be.

JOHNSON-GREEN: I find my own recreational activities...

MINO: Right, you're...

JOHNSON-GREEN: ...They're not going...

MINO: But these are special needs.

JOHNSON-GREEN: ...To treat me different if I'm...

MINO: They're special needs.

JOHNSON-GREEN: Then you're treating them...

MINO: No.

JOHNSON-GREEN: ...As if they're so different...

MINO: No.

JOHNSON-GREEN: ...And that's not right.

MINO: No, no, no. I don't agree.

JOHNSON-GREEN: No, I don't agree with you, either. I don't agree with you 'cause all you want to do is make them little robots, work...

MINO: No.

JOHNSON-GREEN: ...And then they go home.

MINO: No.

JOHNSON-GREEN: That's what you're saying.

MINO: But...

MARTIN: Well, it's a very interesting discussion. It's a very interesting philosophical discussion, you know, about what is your job. I mean, the fact is that when most people go to work, people don't, you know, worry about what they do after they go home. And you're saying, what - Janet, talk a little bit more, if you would, about what - where are you in that? What are you really saying?

MINO: This is my first time going out there visiting different sites, and when I went to different sites, you know, it was like robotic. It was like - they wasn't really interacting and they wasn't really doing the things they enjoy doing. It was just that, OK, this is what you got to do. You got to sort these little things and put it together, and then at the end of the day you go home. I just thought of my own kids and how I would want the lives of my own kids, you know. These young adults, they do have so much to offer. There's something special about each one of them and they do have a gift. No matter where they're at on the spectrum, they do have something to give to society.

MARTIN: One of the things that we learn in the course of the film is you kind of get each person and you understand what makes them tick in a lot of ways, but that you're sending them out into the world where other people aren't going to do that. I mean, on the one hand, that's kind of what happens to most people - you get sent out in the world - but, I mean, is this just a wound that you feel every year at the end of the year? Janet, is that just - is this just something, a pain that's just never going to go away for you?

MINO: Yes. One incident at an IEP meeting, I mean, the...

MARTIN: ...That's an Individualized Education Plan, for people who don't know.

MINO: Yes. The mom was in tears because her husband didn't understand their son, and he was aging out of high school. He was coming to the end of his education plan, and he wanted to send his son to an institutional because he thought that she couldn't handle him. They wasn't together. So the mom was, like, crying to me and she made me cry because she said, this is my son, I'm not going to have him in an institution, he's a good kid. And she was absolutely right. He had so many different skills and that wasn't the answer. So that just makes me so angry that I have to find a place for her because just to see the mom hurting - you know, mom to mom, when you hurt for your kid it's just - you know, you just find an urgency that you have to help.

MARTIN: But, Samantha, to that end, the unspoken issue is money.

BUCK: Yes.

MARTIN: For example, a lot of the desirable programs that would really be great for a lot of these students don't provide transportation and the parents are not in a position to funnel, you know - to ferry their kids there every day and pick them. So they opt for programs that do have transportation, even if they're not as stimulating. Some of the students are capable of working, but the only way they can really do it is if they have a job coach who's willing to go and kind of keep them on track. And if a business isn't willing to accommodate that or if they can't find somebody on their own, they can't work. I mean, so, Samantha, what do you want us to draw from that? I don't really know - how are you supposed to feel? I mean...

BUCK: ...Well, at the end of the movie, I hope - the goal was that you would get to know every single character, including the guys in class. And get to know them through their relationships with each other and through their behaviors, without having some expert come in and diagnose them, and become emotionally attached to them and love them as much as we loved them. So you want to see an Erik get a job coach. The hope is that people love them enough and love Mino enough, and I think it's pretty realistic in terms of what we found in this community, which, you're right, is financially - they're, you know, poor. It's impoverished, but we found a lot of really amazing, loving, caring people who are trying to do the best they can.

My hope is that organizations, national autism organizations, you know, could watch the film and really challenge themselves and ask, are we reaching the inner city area? Are we getting them the information they need? Is it filtering down to them? We've been working with Senator Menendez a lot. He's been a big supporter of the film, Senator Robert Menendez of New Jersey. He's just introduced something called the AGE-IN Act, which basically is trying to get more funding to find out what programs are out there that are working, how do we get money to them and to figure out the best means to transition. He has this whole step where you train people to be transition navigators, to help families and help these young adults move from the high school into, you know, into the, quote-unquote, you know, the real world.

MARTIN: If you're just joining us, we're talking about a new documentary. It's called "Best Kept Secret." It follows a class of young adults who are on the autism spectrum, and it follows them as they age out of public school. We're talking about this with filmmaker Samantha Buck and Janet Mino. She's a teacher who's featured in the documentary. I do want to give people a sense that a lot of these young people are in fact capable of more than people might think they are. And I want play a little bit from Erik's valedictory address upon his graduation.

(SOUNDBITE OF DOCUMENTARY, "BEST KEPT SECRET")

ERIK TAYLOR: I came to John F. K. school as a little boy, but I leave it as a young man. I would like to say thank you to my classmates. You have been my family here, and I will never forget you and I hope you will not forget me. Thank you.

MARTIN: People might look at this film and they say, you know what, it's great that Erik, you know, Erik's job - his dream was to work at Burger King. He loved the job, but that he needed somebody to coach him on an ongoing basis - and I think somebody - in order to fulfill these tasks. Even though he loved doing it, he still needed a lot of intervention in order to fulfill that job. I think some people might look at that and think, you know, why?

BUCK: Well, you...

MARTIN: ...You know, can you really realistically expect that that's what a business is going to do or that society can accommodate?

MINO: Can I just explain that because...

MARTIN: ...Sure.

MINO: ...When Erik first started working at Burger King, he had a job coach three days a week, and then I gave him a schedule of all his duties that he had to do at Burger King. So then he used his schedule to follow everything that he had to do. So I was able to fade the job coach away. So as time went on, Erik would know that routine like the back of his hand and he wouldn't need a job coach. He just needed a job coach for a longer amount of time, but maybe one of the days out of the week that he was working. With children with autism, once they learn a skill, they do that skill better than most people do their job...

BUCK: Yeah.

MINO: ...And you can count on them.

BUCK: Yeah, and I think the thing is, in terms of money, I mean, how much money are we spending to institutionalize these, you know, people who should not be institutionalized?

MINO: Right.

BUCK: I think if you were to break down, financially, it benefits us as a country, as a whole, to put some money - more money into these programs so they - the ones that are working can have longer hours, money into transportation so these young men and these young women can get back and forth to, you know, program A to program B, to a job. It sounds so daunting and so huge and, you know, it is, but the alternative isn't really going to be an alternative much longer because right now, there's, like, I guess 50,000 - roughly 50,000 children a year who are reaching adulthood and transitioning out. That number's going to just get bigger and bigger and bigger.

MARTIN: But, Janet, can I ask you this question, if you don't mind? It's a little bit of a cliche, you know, like, the heroic, you know, teacher against the odds. I mean, it is. It's kind of like a staple of documentaries by well-meaning people. One of the things about this film that I liked is that it's - you really seem like you're part of a team. Yes, it's true that you have - you seem like you have incredible reserves of patience and joy, and you really seem to really love working with your kids. But I also notice that you're very respectful of their parents. I'm just wondering what's the key to your job? Is it just - is it being stubborn enough to feel like everybody can function at a higher level than perhaps other people might think they are, they can or is it bringing in the village? Is it really expecting everybody to participate, everybody to do their job? Do you see what I'm asking?

MINO: At JFK, we work as a team and they just highlighted me, but I had a wonderful staff. My assistants, they follow my lead and they work really hard, and they got the compassion and the love for the students as well as I do. And as for the parents, we have to include the parents 'cause they're the one who's going to deal with them after they graduate. You got to remember, most of - the majority of my class, these are grandmas that's raising children with autism. These are sponsor moms. These are single moms. These are people that don't want to deal with it, but had to deal with it.

MARTIN: What do you think it takes to be good at your job? I'm sure some people might look at this documentary and think, oh, I could never do that. I could never deal with, you know, kids who can't express their emotions particularly well, or I could never, you know, work on getting a kid to write an essay who is so withdrawn or who - I just couldn't do it. What does it take to be good at that?

MINO: Just listen. Just listen. Watch the kid - the young adult. The first young adult - I keep calling them my kids. You just got to watch them. You got to look out for their strength. You can't be judgmental. You got to realize there's a person inside of them. You got to realize they studying you more than you studying them. They know what you going to do before you do. They know you. They read my body language so well, and it's so funny 'cause sometimes I just have to shoot them a look, and they know they're not supposed to be doing it and then they stop. But people don't take time to engage them and get to know them and get a relationship with them before they start teaching them and jamming things down their throat. You got to get that connection.

MARTIN: Samantha, before we let you go, is there something that you think you learned from this project that you otherwise would not have known?

BUCK: Every family who has a young person with a disability fears age 21. It doesn't - it's not racial. It's not financial.

MINO: Right.

BUCK: It is called falling off the cliff, and that exists for everybody. Obviously, if you have financial means, you have more options. I would say what I found with our families in Newark, that the smallest thing could make or break a success story, and you mentioned transportation. That was so eye-opening to me, that if you have a child and you find them placement, but that place is only open from 9:00 a.m. to 2:00 p.m., and then they find placement in the afternoon or a job and that's only from 3:00 p.m. to 6:00 p.m. - you're a working parent or a sponsor parent who works, or you don't have a car, then the idea that there's just no way from - said person to get from point A to point B, could mean they end up at home or eventually in an institution is just heartbreaking. And it's so simple. It is, like, the simple things that we kind of take for granted that could make or break these families.

MARTIN: Samantha Buck is director and filmmaker of "Best Kept Secret." It goes to theaters in New York and Los Angeles tomorrow. It will premier on PBS on September 23rd. Janet Mino is a special needs teacher at John F. Kennedy High School in Newark. She's featured in the documentary and they were both kind enough to join us from member station WBGO in Newark, New Jersey. Samantha Buck, Janet Mino, thank you both so much for joining us. Janet, best wishes for a successful school year for you and your kids.

MINO: Thank you.

BUCK: Thank you so much.

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