Friday, January 25, 2013
BOB GARFIELD: For the past couple of years, the satirical paper The Onion, has produced a series of segments called “Autistic Reporter,” in which an actor playing someone, somewhere on the autistic spectrum is sent out for on-the-spot reports. You can see where this joke is going. Here's the autistic reporter on missing hikers.
THE AUTISTIC REPORTER: Hikers were last seen 174 hours ago. Since then, three very big storms have hit here. There’s a 1.24% chance that all of the hikers are alive. There is a 3.87% chance that one or more of the hikers are alive.
BOB GARFIELD: In Florida, there’s a group of people who prove that’s not quite right. The Autism Channel puts real people from the autism spectrum in front of the camera. The channel is available on Roku, a device that streams the Internet onto your TV, and so far they've got 13,000 viewers and an expanding group of shows. The Channel is aimed at the growing number of families who have a child diagnosed on the spectrum, as well as people diagnosed with autism themselves. Those numbers are growing quickly. In 2002, 1 in 150 children was diagnosed. In 2008, it was 1 in 88.
We sent OTM producer Chris Neary to Florida, where the channel is based, to meet some of those hosts and to see what the Autism Channel looks like.
CHRIS NEARY: So a few months ago, I had lunch with Daniel Heinlein. The first thing I found out? When he was a kid, he really liked television.
[TV SOUNDTRACK/UP & UNDER]
DANIEL HEINLEIN: I would just sit there and watch “The $25,000 Pyramid” all day.
HOST DICK CLARK: And here is $10,000. That’ll take you up to 24-
DANIEL HEINLEIN: And I would come up with my own game shows, and I would memorize the game show hosts.
DICK CLARK: For $10,000, here is your first subject. Go!
FEMALE CONTESTANT: A rabbit’s foot, a four-leaf clover –
DANIEL HEINLEIN: I would sit in, in class in second grade and draw sets for game shows. I would write music for game shows. It would just – it was all I cared about.
FEMALE CONTESTANT: A wishbone.
FEMALE CONTESTANT: Things you break, things you - [CHIME]
CHRIS NEARY: Daniel has Asperger’s Syndrome, a high-functioning kind of autism, which often features these sorts of obsessions. Growing up, he memorized maps of southern Wisconsin, where he’s from. He also absorbed the entire history of the Hartford Whalers, a hockey team that doesn’t exist anymore.
DANIEL HEINLEIN: When I was about two years old, I would watch the commercials between shows and when the commercials were over I would cry. My parents would tape all the commercials and just put them on a loop, so I could watch the same commercials for Pillsbury Microwave Brownies over and over.
CHRIS NEARY: Daniel struggled academically and socially in high school. He didn’t pick up on basic social cues, things like maintaining eye contact and standing the right distance away from someone when you're talking to them. Things have improved in the last few years, but at 26, he lives with his parents.
Some companies seek out people like Daniel because they're capable of such sustained focus. One Danish company matches people on the spectrum to jobs in the tech industry. Autism advocate Temple Grandin suggests careers in engineering and computer programming. What you won't see on that list of compatible jobs is TV host for a streaming cable channel. And yet -
[MUSIC UP AND UNDER]
DANIEL HEINLEIN: When I was very young, I was on track to do great things in school, but as I got older I started having problems. But after years of struggles, I was diagnosed with Asperger’s Syndrome. I didn’t believe it and begrudgingly went with it. But now I feel I’m part of the autistic community, one which in the United States alone numbers over 16 million people. I’m Daniel Heinlein, and I am autistic.
CHRIS NEARY: In “I am Autistic,” Daniel interviews people in the autistic world, both on and off the spectrum. Daniel’s autism is mild. It’s just one part of the spectrum. On the other end of the spectrum, some people don’t talk. Others attack themselves and need constant supervision.
You might think of people on the spectrum as having a static condition, but they can improve their social skills. Daniel’s upbringing helped. His grandparents owned a radio station. His father was a radio announcer. And, of course, being on television has helped. For instance, it’s helped him cultivate a sense of empathy, a trait that talk show hosts often have to fake.
DANIEL HEINLEIN: I wasn’t naturally an empathetic person, until I started doing the work with the Channel and meeting all these people and finding out all of the things that they’re struggling with and finding out that there are people who are like me, there are people who are worse off than I am.
JERRY TROWBRIDGE: We probably wouldn't be doing this channel if it weren’t for Daniel.
CHRIS NEARY: Jerry Trowbridge is the co-founder of the Autism Channel.
JERRY TROWBRIDGE: Finding somebody with a social disorder who can connect with the camera is really a difficult thing to find.
CHRIS NEARY: Most people enter the autistic world when their child is diagnosed, but Jerry and his business partner, Ray Smithers, have no personal connection. They just had an idea for a pilot of Daniel’s show that they nearly sold to the Oprah Winfrey Network. Jerry is 60, Ray is 70. They’re bankrolling the station for now. Costs are in the high five figures so far, and there's no ad revenue yet. So with one assistant, they book the guests, operate the cameras, do postproduction, upload the shows and promote the station online.
If Jerry and Ray have a goal, it’s to use the Channel to take some of the stigma away from being on the spectrum.
JERRY TROWBRIDGE: A lot of people tell you it's a disaster, it – it’s an epidemic, it’s, it’s terrible, and there are certainly aspects of that. But we are also developing a society that many of the members think differently and that - that's not necessarily bad. One of the people who does in-home videos with us says, I'm not out to change my child. I'm out to change the environment my child lives in.
[TALK SHOW HUBBUB/UP & UNDER]
CHRIS NEARY: The Autism Channel’s one small studio is set back from a two-lane road in a quiet part of West Palm Beach. On one side of the studio there's a classic talk show set, with chairs and couches and a coffee table. On the other side, a two-story green screen that allows them to create different backdrops for different shows. Right now, Daniel is interviewing Michael Garvin, who’s on the spectrum himself, about his new show, “Garvin on Garvin.”
MICHAEL GARVIN: Hi, Dan.
DANIEL HEINLEIN: Hi, Michael. Welcome to “I am Autistic.” Usually when I have a guest on here, I say, I am here talking…
CHRIS NEARY: “Garvin on Garvin” is built around Garvin’s quirks, which are many.
MICHAEL GARVIN: I may be autistic but I think the rest of my family makes me look normal. So does that teleprompter and so does my director because he – they told me not to slouch. So I can’t be a sloucher because the teleprompter will not teleprompt.
CHRIS NEARY: Garvin has had and lost many jobs. He rubbed co-workers the wrong way. But in front of the camera, he’s comfortable.
MICHAEL GARVIN: You know, I’m not gonna hide it. [LAUGHS] I mean, I would wear clothes like green with purple – shorts or something, and, and black socks with hard shoes, and everybody would say, yeah, that guy’s a weirdo. I said, I said, if I’m a weirdo, I might as well – admit I’m a weirdo.
CHRIS NEARY: Jerry and Ray plan to make the Autism Channel available on more streaming devices, to reach more viewers. But as the station grows, it’ll run headlong into the most contentious issue in the autistic world, the alleged connection between vaccines and the soaring number of autism diagnoses.
Now, this shouldn't be contentious. The Lancet Medical Journal article that propelled the issue was publicly discredited and withdrawn. After a 2011 review of more than one-thousand articles on the topic, the Institute of Medicine found no proof of a connection between vaccines and autism, and yet, a vocal minority of the autism community have stopped vaccinating their children. Jerry says the Autism Channel won't take sides. I asked him why not.
CHRIS NEARY: It's, to my mind, a dangerous view, because you can endanger your child, other children. Do you have a responsibility as a journalist to challenge them?
JERRY TROWBRIDGE: We do, but we’re really not in a great position to challenge them, as long as we don't really know what causes autism.
CHRIS NEARY: But you know it's not that.
JERRY TROWBRIDGE: Do we? No. Bad science doesn’t prove anything. We have a lot of other people out there that are maybe not in the scientific mainstream but are licensed doctors that believe that vaccines are somehow involved in the process.
CHRIS NEARY: Ray says the Channel is committed to presenting all views, without immediately rebutting any of them. Daniel, their star host, has not dealt directly with the vaccine issue on his show yet, but he has had guests advocate for some of the many unproven treatments for autism spectrum disorders. And he feels conflicted about confronting them.
DANIEL HEINLEIN: I beat myself up over it. I feel like I can't really go hard on the people that I disagree with, as hard as I’d like to. And I have to empathize with what the parents are going through. And I – sometimes I fear that they’re going to see me as like a traitor to my people, if they’re my people, in the first place, that I'm not advocating withholding vaccinations from your kids. In fact, I think that everyone should be vaccinated, for the good of the public health.
CHRIS NEARY: Dr. Judy Aronson-Ramos hosts “The Dr. Judy Show,” a talk show where she interviews autism experts. She’s a behavioral pediatrician in nearby Coconut Beach, Florida, who has a daughter on the autism spectrum. Vaccines haven’t come up on her show yet either but, if and when they do, she doesn't plan on being agnostic.
DR. JUDY ARONSON-RAMOS: There are children who were healthy, got vaccinated, had a bad reaction and are injured in some way. However, study after study after study after study that's good are showing no connection between vaccines and autism, in general. So I’m not gonna be an anything-goes channel.
CHRIS NEARY: The Channel only started streaming in late September. The way it handles the vaccine connection, and other unproven treatments, will go a long way to determining how it will be received by parents and experts who are drawn to the Channel. But there are other viewers.
MARLOWE KRUEGER-KAUFMANN: Okay, my eldest son is Broderick, and he is 11 years old. He is – you know, he’s tall and average build. He’s not incredibly athletic, but he’s really good at playing chess and he loves science. He lacks social skills, tremendously.
CHRIS NEARY: Marlowe Krueger-Kaufmann lives in Ontario with her husband and three kids. Her two oldest, both boys, are on the spectrum.
MARLOWE KRUEGER-KAUFMANN: And my middle son Riley is more classic autism. He would lay somewhere on the spectrum between classic severe autism and a, and a moderate autism. He has good days and he has bad days. He has days where he speaks and asks questions. There - and then there are days where he won’t speak at all and all he’ll do is stim. And when he stims, he screams.
CHRIS NEARY: Stimming is a repetitive behavior. Marlowe says that for Riley, that means he flicks his fingers around his eyes and screams. It sounds bad, but she says it means he's passing the day in complete joy. He loves the Autism Channel. It comforts him when he’s not experiencing complete joy.
SAM RUBIN: Hi, I’m Sam Rubin. When life gives you lemons, make lemonade. Here’s my lemon!
[PSA SOUNDTRACK/UP & UNDER]
CHRIS NEARY: The show the kids like best is “The Rocket Family Chronicles,” the fictionalized adventures of a real family, led by their 19-year-old autistic son, Sam. He often addresses the camera directly.
[MUSIC UP AND UNDER]
SAM RUBIN: Here's a scene from one of my first films. That’s my dad. He’s having a rough day. [SNORING SOUND] The character I play in the show is Rocket. He’s somewhat like me.
SAM RUBIN AS ROCKET: And now, for Dust Bunny.
CHRIS NEARY: I asked Broderick, the 11-year-old, what he thinks of the show, what it’s like seeing someone else with Asperger's on TV.
BRODY KAUFMANN: It’s just pretty amazing. I’ve never thought that people with Asperger’s could get jobs like that.
CHRIS NEARY: Would you want to be on television?
BRODY KAUFMANN: Yes.
CHRIS NEARY: [LAUGHS] Doing what?
BRODY KAUFMANN: I don’t know - the story of my life?
DANIEL HEINLEIN: After several years of living with Asperger's, I think you learn not to be self-conscious anymore.
CHRIS NEARY: That’s Daniel Heinlein, again.
DANIEL HEINLEIN: Because if you’re gonna worry about what people think about you, you’re never gonna make it out of bed in the morning.
CHRIS NEARY: Twenty years ago, Daniel Heinlein watched Dick Clark hosting “The $25,000 Pyramid” and fell in love with television. Today, Brody Kaufmann can watch Daniel Heinlein. This may end up being the best thing the Autism Channel contributes to the autism world, a new place and a new way for people on the spectrum to see themselves.
[MUSIC UP AND UNDER]
For On the Media, I’m Chris Neary.
BOB GARFIELD: That’s it for this week's show. On the Media was produced by Jamie York, Alex Goldman, PJ Vogt, Sarah Abdurrahman, Chris Neary and Doug Anderson, with more help from Khrista Rypl. And it was edited this week by Jamie York and me. Our technical director is Jennifer Munson. Our engineer this week was Rob Frankel.
Katya Rogers is our senior producer. Ellen Horne is WNYC’s senior director of National Programs. Bassist composer Ben Allison wrote our theme. On the Media is produced by WNYC and distributed by NPR. Brooke Gladstone will be back next week. I'm Bob Garfield.