New documentary 'In A Different Key' follows first person ever diagnosed with autism

Transcript

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​​Geoff Bennett: An estimated one in 44 children are diagnosed with autism spectrum disorder in the US, making it one of the most common developmental disabilities. In a new film airing tonight on PBS called In A Different Key, filmmakers Caren Zucker and John Donvan tackle the history of autism. It includes a portrait of the first person ever diagnosed with autism in the US, a man named Don Triplett, who still lives in the small town in Mississippi where he was raised.

Sid Salter: Once you've been around him, it's just difficult to not want to pull for him and root for him. And in a community like forest. One reaction that Don evoked from the townspeople was that had Don's got some odd behaviors and some eccentricities, but he's our guy.

Geoff Bennett: Autism also has very deep and personal connections to both filmmakers and their families. Caren Zucker and John Donvan join me now. Thanks so much for coming in. It's great to see you both.

John Donvan: Thanks for having us.

Geoff Bennett: Thank you. And Caren, the film tells the stories of many different people with autism, different backgrounds, different ages, some with profound autism, some leading independent lives. But it's through the story of Mr. Triplett, who's now 89 years old, that we see the evolution of the ways in which autism has been viewed and how it's been treated.

Caren Zucker: That well done. Donald Triplett, his case, number one. And without him, we wouldn't be calling it autism. And we were fortunate with some sleuthing to track him down back in. Was it like 2007?

John Donvan: It's been a while. Yeah.

Caren Zucker: And once we knew where he lived and that was his home, we decided that we really should not just show up on his doorstep, that we because he'd lived in privacy, he didn't even know he had autism until we came into his life.

John Donvan: So what we did was we reached out to people we knew who knew him and said, Would you please introduce us? Let him know that there are some reporters we'd like to talk to and we'll go away if he says no. And people were generally willing, but it came with a warning. Well.

Caren Zucker: They said, we'll introduce you to him, but if you mess with him in any way, we will track you down and we will get you. And they will.

Geoff Bennett: Because he's a beloved figure.

Caren Zucker: Right. That was the thing is that we knew at that moment, even before we arrived in forest, that this was a community that was embracing this man and protecting him for his whole life because he was already in his eighties.

Geoff Bennett: And John, you explore in the film how decades ago people with autism were put away in institutions. You say that they were a dumping grounds for the unwanted. That's how you described it in the film. And what struck me was that that was what was expected. There was so much shame and really confusion tied to autism that children were being warehoused.

John Donvan: And that started even earlier with pretty much any kind of disabilities. These places also, especially for people with mental health issues, intellectual disability, that they were called schools, they were called hospitals, but they became dumping grounds. They became places that were understaffed and and overpacked with people with very poor resources that nobody would want to live in.

Geoff Bennett: There's a lot of shame and there was blame. The leading theory was that kids with autism were born to white mothers who were cold and didn't know how to connect with their kids. Is that right?

Caren Zucker: If my if my son had been diagnosed back then, it would have been my fault. And that's what psychiatrist told parents and that's what everybody believed. And they couldn't have been more wrong. I mean, society blamed mothers, sent kids away. Doctors told you, forget about that. You ever had them and go on with your life. It was it was a very bad time. And eugenics, that whole period was a very bad time in our history. And we've come really far. But now we have new issues that we didn't have then because people with autism and people with difference are out there now and society needs to to learn and understand them. And to some extent, that was the the basis of creating a film like this.

Geoff Bennett: Well, as I mentioned, this this film, this issue is personal for you both. You have a brother in law who is has autism, and your son was diagnosed as a toddler, which you explore in the film.

Caren Zucker: All the years I've known him, Mickey has been teaching me more about autism than anyone.

Geoff Bennett: So, Karen, you say in the film that if Mickey is really going to make it out there, I need to know that everyone else is going to make room for him. What does making room for Mickey look like?

Caren Zucker: We so believe, and that's why John and I directed this film together, that if people understand and have insight into clearer understanding, really, of people who are different, that and they see that it's not so hard to have the back of somebody who's different that they will. I mean, I'm not 1,000% sure. I hope I hope that, you know, with all my heart. But that's the best shot we have for people who are different to make it.

John Donvan: I think in the piece of that and I know that's true for Karen is true for the parent of anybody who has a child with a disability. They right now are the main caregivers for their child, but they know that they won't always be there. And in the case of autistic people who are who are navigating through society now and some of them are still struggling, what they need is for everybody. Else to accept them in the moments of interaction. And the rest of us have so much impact on whether or not somebody on the spectrum gets to belong in a workplace, in a classroom, on the bus, at a ballgame, in the movie theater, in a restaurant, by how we respond to their difference. And if we can roll with it, that makes a huge difference.

Geoff Bennett: On that point of belonging in the film, you introduce us to a mother named Stephanie Parks. Her son has autism, and she talks about the ways in which people of color have a whole different range of difficulties, especially as her son is a young black man. She had a hard time just getting him diagnosed.

Stephanie Parks: We had a three year old that was still in diapers and was completely potty trained, completely non-verbal. He was lining up toys in absolute grids across our floor. I mean, we had every red flag possible and we still couldn't manage to get a diagnosis. We went to the pediatrician several times and we got the same type of response that most families get, especially black families, which is our boys are a little slow. He's slower than other kids. Maybe, you know, he'll catch up.

Geoff Bennett: What kind of added issues do do people of color face?

John Donvan: So what Stephanie goes on to say is that the criteria that are used to diagnose an autistic child are have been based on the behavior and the language primarily of white male children. Those are the standards. And so it doesn't apply necessarily to girls and it doesn't necessarily apply to people of color. And so if you looked at the rate of diagnosis over the last 20 years, it seems as though there is less autism among children of color. But that's not the case. It's that the diagnosis of children of color is lower because, as she says, there's an inherent bias in the criteria itself. And the problem, the reason that's a problem is that it delays the time for for a child of color to start getting help, especially in the early part of their lives. That's a critical period, the ages of 2 to 5.

Caren Zucker: Early diagnosis is essential, and there's an inherent racial, racial bias. And so these kids start out at a disadvantage, even if they're diagnosed with something. If it's not autism, you're taking them down the wrong path.

Geoff Bennett: You've been working on this documentary for years as you produced it. What surprised you?

Caren Zucker: For me, it's in the last 20 years or so how broad the spectrum has become, and that when my son was first diagnosed, you didn't have television shows of speaking savants and doctors and and people who lived independent lives and which is great that we're seeing people with autism out there speaking and talking about their lives. But what we're not hearing at all anymore are people who have more profound autism, who can't speak for themselves. And the only people who can speak for them are their family members. And without their voices, they don't get heard at all. And that's almost half the population of the of the autism spectrum. And so part of our goal in this film was really showing everyone, again, the breadth of the spectrum and that there's so many different people and they come in all different shapes and sizes and colors. And you meet one person with autism, you've met one person with autism.

Geoff Bennett: Yeah, well, the documentary is fantastic.

John Donvan: Thank you so much.

Geoff Bennett: Caren Zucker, John Donvan. The film in A Different Key airs tonight on PBS.

John Donvan: Thank you.

Caren Zucker: Thank you