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Interview with Tricia Regan

Tricia Regan interview

HBO

What brought you to this project?

Tricia Regan

I became interested in autism in high school. Then when I was in college I worked in a clinic for autistic kids. At that time autism was not that common. I really never expected to come across it again. But then one of my good friends had a son who was diagnosed with autism. She was approached by a group of parents that wanted to make a film about autistic kids. She suggested they talk to me because they had never made a film. That connection started a series of conversations with me just advising them.

After hearing what they wanted to do, which was to reach a broader audience, and to sort of show the world how great these kids are, I said, I don't think that you really want to make a film about autism. Because if you make a film solely about autism you're not gonna reach a broad audience because people aren't going to want to sit through an hour and a half of that. You know, it's difficult, it's painful. Most folks would rather go to a movie that gives them drama and entertainment. So I suggested that they find a structure where it's about kids with autism but autism isn't the subject. Autism is their obstacle while they try to achieve something greater than people would expect them to.

I suggested something like a play or an athletic event. And they jumped on the idea because they knew this woman, Elaine Hall, who had just started something called The Miracle Project, where she was taking a group of kids with autism and working with them, and trying to create and perform an original musical. So I suggested that they shoot some footage of that and cut a trailer and try to raise money. And they did that and then asked me to direct it.

In this movie the kids are struggling, trying to make their way in a world that doesn't understand or accept them and that they don't understand and accept.

HBO

Seeing these kids accomplish something greater than people would expect is one of the joys in watching the film.

Tricia Regan

Well, it's a classic movie structure which is so satisfying because you have a group of people struggling against the odds to achieve something great. In this movie the kids are struggling, trying to make their way in a world that doesn't understand or accept them and that they don't understand and accept. And the parents are struggling in a world where their lives have taken a left turn they never could have predicted.

Just trying to be parents in this world that has no real place for kids with autism is a heartbreak every single day, from getting them into school to teaching them, to things like impulse control or something as simple as taking them to the supermarket. Often it is impossible with a kid with autism. So in the course of this movie, we go through that emotional journey of trying to lead a life that is productive and happy and fruitful and successful, where there's this constant obstacle, which is oftentimes societal and has nothing to do with the disorder.

HBO

One of the many myths the film shatters is that autistic individuals are somehow lacking in intelligence.

Tricia Regan

In my experience, these kids all have a profound sense of intelligence. I'm not gonna say that they're all smarter than the next kid, because I don't know if that's true. But a lot of them do have these specific quirks that make them kind of genius in particular areas. And they all have a real sense of intelligence of what's going on around them.

As far as I can see, there are scarce resources being spent investigating what might be causing this sudden and massive rise in numbers of those afflicted.

HBO

Autism is now called a modern day epidemic. Why?

Tricia Regan

In 1980, the rate of autism in the U.S. was one in ten thousand kids. This year it's one in a hundred and fifty. And those are Center's for Disease Control statistics. Some people argue that it's just over-diagnosis. I don't find that to be true because I have spoken with a lot of pediatricians and educators who have been working with children for thirty, forty years. And they will say to you, there are more sick kids now than ever before. And it's not just autism. It's diabetes; it's childhood cancers. It's all sorts of learning disorders and mood disorders.

Now, we can all guess that it probably has to with the rate of pollution and inorganic materials that we're surrounded by. But who knows? I think people are trying to figure out how to cure it, how to treat it, and what the gene is that causes autism. But as far as I can see, there are scarce resources being spent investigating what might be causing this sudden and massive rise in numbers of those afflicted. There are no genetic epidemics, so there must be a "second hit" so to speak, something that happens outside of the body, that is triggering this rise in numbers. That is what has kept me up at nights, wondering what that thing is, or what combination of things.

HBO

The film has played at festivals all over the world. How have audiences reacted?

I find that people who have had no association with autism at all come out really with not only an understanding of what it is but a curiosity and an acceptance and a desire to know a person with autism.

Tricia Regan

Showing this film to audiences has become one of the greatest pleasures of my life because people are so moved. And it's not just that they cry, which they tend to. And it's not just that they laugh, which they always do. It's not just that they are so overwhelmed with feelings of love at the end of this movie for these kids, which they always are. It's all of those things. And for the parents, I think because they've been living this secret life of suffering for so long it gives them validation for their struggle, and also the validation that their kids really are pretty great.

I find that people who have had no association with autism at all come out really with not only an understanding of what it is but a curiosity and an acceptance and a desire to know a person with autism. It opens their hearts and allows them to look at their own lives in a new way.

I've always said - and people always thought I was joking - all I want is for this movie to change the world. Now, that may seem a little ambitious but I think the world is changed one mind, one heart at a time. And to me, there's this whole generation of kids with autism coming up and they are soon going to be adults. They're going to be in our universities. They're going to be in our workplaces. And eventually they'll be in our senior citizens' homes. They are here to stay. They're not going away. And we need to make room for them.

And in a larger symbolic way, I feel like we all are a little autistic. For all of us there are ways that we feel freakish, or we just don't fit in. And I think that this movie can open your heart to begin to accept ourselves and others for exactly who they are, and understanding that if we can accept ourselves and the people in our lives for exactly who they are that we'll all be a lot better off.

Autism: The Musical