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Loving Lampposts: Living Autistic
Todd Drezner recently directed his first documentary film "Loving Lampposts: Living Autistic," (available on DVD, queue on Netflix) and he is also the father of Sam, an autistic child. The title of the film refers to the circuit of lampposts that Drezner’s son likes to visit in Prospect Park in Brooklyn, N.Y.
Drezner received his MFA in Film from Columbia University and is the editor of several award-winning documentary films and commercials.
Elesia: Wow, there is quite a buzz going on about "Loving Lampposts"! Congratulations! For our readers who have not yet heard of your film, please share a summary.
Todd: "Loving Lampposts" looks at autism's place in the culture at a time when it is more well-known than ever before. While there are a lot of great documentaries out there about individual autistic people, I hadn't seen one that looked at how society views autism today. My son's obsession with lampposts, which was in full swing shortly after he was diagnosed, offered a good way into thinking about autism. Visiting lampposts in the park is "autistic behavior." The question is what to do about it -- try to eliminate it or accept it? That's the central debate about autism today, and in trying to answer it, "Loving Lampposts" focuses on a wide variety of parents, doctors, advocates, and autistic children and adults.
Elesia: Where can people find out more about screenings, and/or order a personal copy of "Loving Lampposts"?
Todd: The film website is "Loving Lampposts: Living Autistic," You can order the film on DVD or download it from iTunes.
Elesia: The word autism conjures different ideas and images depending on who you ask about it. How do you interpret autism? What do you think about and envision when you hear that word?
Todd: That's a very hard question to answer. In fact, I asked almost every person I interviewed for the film, "What is autism?" and I got many different answers. Part of what makes the question controversial is that there are no defined biological markers for autism. It's diagnosed based on behaviors, and the DSM definition suggests no underlying reasons for those behaviors. That leaves the word "autism" open to all sorts of different interpretations and political agendas. I think that's why we see so much disagreement about autism in the culture.
The best I've been able to say is that every autistic person exhibits some of the DSM behaviors, although they manifest in many, many different ways. Beyond that, I view the diagnosis mainly as a tool for people to get the services they need. It may seem ironic that we devote so much energy and so many resources to a condition we can't define, but I think that's the situation we're in.
Elesia: In your film, you touch on what happens when we change circumstances for Autistic people instead of only targeting changing Autistic people (to fit the stereotypical view of what is acceptable or "normal"). What possibilities and realities open up when we look to change circumstances instead of people?
Todd: I think that when we try to change people, we start with the assumption that they are flawed in some way. That attitude can affect how we treat them, even if it only does so subconsciously. When we try to change circumstances, we start with the assumption that people's functioning might improve if their environment improves. So we move a child out of a typical day care class with 18 kids into a special needs class with nine kids (as we did with my son). Or we give an autistic person who has trouble speaking access to text to speech software. Or we allow an autistic adult in the workplace to write down his suggestions rather than sharing them by speaking at the meeting. It's much easier to change circumstances than people, and it can make a dramatic difference.
Of course, behavior that's harmful to one's self or to others should be addressed immediately, but for the most part, I think it's more useful to look at how we can improve a person's environment to help her
function better. It's about presuming competence rather than presuming defects.
Elesia: Some diagnosticians remove the ASD label from clients they feel no longer require the label. This is a controversial practice. For example, if someone diagnosed with Cerebral Palsy lives independently, has a full-time professional job, and doesn't use a support person, does that mean they no longer have CP? Are deaf people no longer deaf when using an American Sign Language interpreter, or if they are in a situation where a hearing aid or a cochlear implant is sufficient? Why un-diagnose someone based on the effectiveness of their support or the quality of their lives, especially when support and quality of life are always subject to change? Autistic people aren't static, and the losing of a label doesn't mean that a person will never exhibit qualifying Autistic behaviors at any given time. Where do you stand on this issue?
Todd: This question seems to be focusing on adult autistics who can live independently (the ones most likely to lose the label), and in that case, I really think it's up to the individual. Again, unlike CP or deafness, autism doesn't have biological markers, so it's not really clear when someone moves off the spectrum. But if an independent adult makes a decision that he no longer wants the label, I would respect that. Simon Baron-Cohen, the Director of the Autism Research Centre at Cambridge University, made a good point about this in his interview for my film. He said that the autism label helps people get the services they need. When their environment changes (for example they grow up and are able to specialize in an area of interest), they may find they no longer need services or the autism label. The removal of the autism diagnosis is not a "cure," but an acknowledgment of their changed environment.
As you point out, their environment could change again, and perhaps some people will find that they need a label again. You could also make a political argument that keeping the label can help change society's views of autism, and I agree with that argument. But the autistic advocacy movement is about allowing as much self-determination as possible for autistic people. I believe in that concept even for an autistic person who wants to opt out of the label.
Now if you are talking about children whose parents want them to lose the label, that is a very different story, but perhaps a bit too complex to get into here.
Elesia: In an article you wrote for Huffington Post, you mentioned that a single Autistic person can reside at different places on the autism spectrum at different times. This is a reality the Autistic community has long been raising awareness about. Please explain how this concept came to make sense to you.
Todd: The concept came to make sense to me because autistic adults kept telling me about it. I was trying to understand why it's problematic to label autistics as "high functioning" or "low functioning," and autistic adults kept pointing out that their functioning levels could change at different points in time or based on what kind of task they were trying to do. I saw the truth of this with my son. If I tried to take him on one of the New York City subway trains that he is scared of, he was a screaming, crying, "low functioning" autistic. If I asked him to write down his favorite words, he was able to do so more adeptly than most kids his age. Like the rest of us, autistic people function well at certain times and less well at others. If you weren't talking about autistic people, this would be a really banal observation, but it's a concept that a lot of people seem to have trouble grasping when it comes to autism.
Elesia: You've been known to use the phrase, "If you've met one Autistic person, you've met one Autistic person." Tell us more about what you hope others will think about when they come across that concept.
Todd: Almost any label brings with it a set of stereotypes. Think of all the labels floating around, say, political culture--Tea Partier, liberal, birther, progressive--and you can immediately come up with a description for each of them. It's the same with autism. People have preconceived ideas about what autistic people will be like. As with other labels, these ideas are sometimes wrong. So while "If you've met one autistic person, you've met one autistic person," is partially a description of how broad the spectrum is, it's also a recommendation to remember that like anybody else, an autistic person is unique. With neurotypical people, it's easier to focus on the individual without getting distracted by stereotypes. It's much harder with autistic people, but it's important to do. Autism is a central part of who they are, but that doesn't mean you know everything about an autistic person the moment you meet her. To put it a little sappily, we are all more than our labels.
Elesia: In regards to neurodiversity, you mentioned, "Autism never stole anyone's soul. What's really harmful is forcing someone to act against his own nature." Any further thoughts?
Todd: Not much to add here. I think this statement sums up my feelings pretty well.