Kathleen and I were able to put together some questions for Todd Drezner, director of Loving Lampposts.
Kim: In my review, I noted that you had avoided the harshest landscapes of the autism world while still surveying a wide swath of it. In your director’s statement, you write “I've met parents of severely autistic children whose patience, acceptance, and support of their kids are truly inspiring.” Did you meet parents who didn’t accept, who weren’t coping well? Were there families that you met and interviewed that didn’t make it into the documentary?
You also write that you “can't help but be optimistic” at the end of making the documentary; I think that many watching the documentary will feel that way, as well, but that those families whose situations are grim, who are struggling to help children who are severely impaired with multiple co-morbid conditions, who reject the concept of neurodiversity (because they define it differently), will reject the documentary and the optimism. What would you say to those families and individuals? What do you think the autism community and the larger community could do to help these families?
Todd: It's true that the film does not show any autistic person engaging in harmful or self-injurious behaviors. There are a couple of reasons for this.
Partially, it's because I didn't happen to film anyone who engaged in those behaviors. This wasn't a choice; it just worked out that way (although there are a couple of families who I filmed who didn't make it into the movie, it had nothing to do with the severity of their children or their lack of acceptance of autism).
But perhaps a more important reason is that I felt that that kind of behavior has been shown too much in recent portrayals of autism. I started my film in 2007, shortly after "Autism Every Day" came out. I have a lot of problems with that film and with other portrayals of autism that suggest it is always and only horrible. As someone says in my film, "The scales have been tipped too far in the direction of misery." I think the wider world needed to see a different view of autism.
That being said, I think it's not entirely accurate to say that "Loving Lampposts" doesn't address issues of importance to severely autistic children or their families. I'm thinking particularly of the interview with Ralph James Savarese, who specifically says that advocates of neurodiversity need to do a better job of reaching out to parents of children who "bang their heads against the wall and punch holes in the wall 40 times a year."
Although he's not a child, I also think about 60 year old Lyndon and his mother Lila. Here is someone who didn't speak until he was ten years old, who grew up in the 50s and 60s when autism was unknown, and who was recommended for institutionalization. In other words, a fairly "severe" case. Although I don't say this explicitly in the movie, the issues that Lila has been dealing with for years--how to give Lyndon as much independence as possible, how to provide him with the support he needs--are the same issues that parents of severely autistic children will face as their children get older. The fact that Lyndon is doing relatively well now doesn't make his and Lila's challenges any less relevant to parents who are struggling with severely autistic children today.
Then, too, there is a problem of definition: what exactly do we mean by severely autistic? A viewer of my film might look at, for example, Charlie Fisher and see a minimally verbal child with limited reading and writing ability and occasional "challenging behaviors" and think of him as severely autistic (he was probably one of the people I had in mind when I wrote my director's statement). And if we don't think of him that way, then why not? Because Kristina Chew doesn't refer to him that way? Because Kristina and Jim are fairly happy? Or for some other reason? Whatever the answer, it's clear that like autism itself, "severe autism" is not easily defined and is largely subjective.
It's also important to note that no one's place on the autism spectrum is static. The film spends a bit of time on this point when I talk about "high functioning" and "low functioning," but it's worth bringing up here as well. Autistic people, like anyone else, can have a bad day, week, month, or year. A child who is engaging in harmful or self-injurious behaviors today may not always be doing so. A family that's feeling very grim about its situation may feel better about it a year from now (and vice versa).
To try to sum up, neurodiversity is not a philosophy that only applies to optimistic people whose autistic children are "doing well." It's an approach to thinking about autism that is as relevant to a parent of a severely autistic child as to a parent of a child with Asperger's. I hope that families whose situations are grim and whose children are impaired with multiple co-morbid conditions are able to get their children help for those conditions. But if and when those conditions improve, those families will still have autistic children. How will they think about autism? I think neurodiversity offers the best approach.
Kim: How long has the documentary been complete and what have you learned in that intervening time that you wish you had been able to show in your documentary?
Todd: I finished filming in the first part of 2009 and finished the final edit in April of 2010. We've certainly seen some more developments on the vaccine front and the Andrew Wakefield saga since then, although I'm not sure how much of that I would have put in the film. One point that comes up in this weekend's NY Times Magazine story about Wakefield is that there is some research that shows that autistic people may have more gastrointestinal problems than other people. However, doctors have been reluctant to address parents' concerns about this because "doctors associated those concerns with quackery and vaccine fears and the false hope that a diet could cure the autism itself." I think I would have put a point like this into my film because it shows how our obsession with cures is actually setting back scientific research that could help alleviate medical problems that autistic children are more likely to have.
Kim: What surprised you most as you made the documentary and met autistic individuals and their family members?
Todd: We all hear a lot about the great variety of the autism spectrum, but it's something else to see it. What was always the most interesting was to meet a new autistic person and find out what was unique to him or her. At the same time, as different as they all are from each other, I could usually find a trait or two that they had in common with each other and/or with my son. One of the great benefits of making the film (and I hope of watching it) was to understand that I'm not alone. And neither is Sam. He has a community, and we will be raising him to take his place in it.
Kim: Is there anyone you wanted to interview for your documentary who you didn’t get? Do you hope to do a sequel in the future?
Todd: I was very lucky that just about everyone I approached agreed to be in the film. As for a sequel, autism is obviously going to be a lifelong interest of mine, and I would never say never. But from a filmmaking point of view, I think I need to try something different, and so I think my next film or two will be about other topics.
Kim: Who do you hope to reach primarily with this documentary: members of the autism community or the wider world?
Todd: Well, yes. Both. More and more, people from the wider world will be meeting autistic people, and I hope that they will not view autism only as a terrible tragedy. And of course, some people from the wider world will eventually become part of the autism community. I hope my film might be helpful to parents or other family members who've just gotten a new diagnosis for a child or even to potential parents who are worried about autism. I think many people in our society could benefit from thinking in new ways about autism.
Kathleen: What inspired you to make this documentary? What made you do this now, while he was still so young?
Todd: Partially, it was because I had edited other documentaries and was looking to make one of my own. This topic was on my mind, and my son's obsession with lampposts seemed like a good way into asking some central questions about autism. Although there are many great documentaries about individual autistic people, I thought there was room for one that looked at how the culture thinks about autism at a time when it's more well-known than ever before.
As for why I made it when Sam was so young, doesn't every parent of a newly diagnosed child have a fantasy of talking to everyone else who's ever dealt with or thought about autism? I actually got to live out the fantasy, and making the film was part of the process of coming to terms with Sam's diagnosis. It's not like I was expert in all of these topics when I started. I may not be an expert now, but I can bring what I learned to my parenting of Sam, and if I hadn't made the film, I might be parenting him from a much more scared or confused place.
Kathleen: Has your son seen it, and if he has, what does your son think of it? Did he like it? Did you explain to him what and why you were doing this?
Todd: He's seen some of the parts that he's in and especially likes watching himself at the lampposts. But the central questions of the film and my reasons for making it are over his head right now, as they would be for any kid his age. I plan to show it to him when he's old enough to follow it, and I'll be very curious to hear his opinion about it.
Kathleen: What audience did you make this film for? What are you hoping to accomplish with this film?
Todd: I think I covered this one in the earlier question about who I hope to reach with the film.
Kim: Is there anything else you’d like to share about this film, any concluding thoughts you’d like to offer?
Todd: No, I think we've covered a lot of ground. Thanks for the thought provoking questions.