It didn’t take long for Todd and Erika Drezner — a documentary filmmaker and a high-school English teacher who live in Brooklyn — to realize that their bright, blond, cherubically handsome son Sam is not a typical kid.
When he was still a baby, Sam would take the letters from his favorite alphabet puzzle and line them up in a certain order. This sequence wasn’t alphabetical, but it was clearly important to Sam; he had the series memorized, and could recite it from memory. When he felt stressed out — like on the first day of going to a new school — he might spend hours muttering the sequence to himself, like a soothing incantation.
Letters weren’t the only things that embedded themselves in Sam’s prodigious memory. One day a car owned by his aunt got towed away, and she couldn’t remember the license number. Todd asked Sam, and he recited the digits on the license plate right away.
One of the most unusual of Sam’s preoccupations, however, involved making frequent pilgrimages to a certain set of lampposts located about a mile from the Drezners’ apartment in Prospect Park, a blessed few hundred acres of shady green in the asphalt heart of Brooklyn. Sam seemed enamored by these tall, elegant, elaborately cast fixtures; to touch each one, he would raise his hands as high as he could, sometimes standing on the elevated base so he could wrap his arms fully around the pole. He embarked on long reveries beneath one particular post, stroking the long grass at the base with his fingers. This whole ritual of devotion – with stops for snacks – could take two hours.
At the same time, Sam was slipping behind his classmates at school on some basic skills like acquiring spoken language. For a sweet little guy, he could seem awfully remote at times. At the prompting of his teachers, he was diagnosed in early 2007 with a form of autism known as PDD-NOS, short for Pervasive Developmental Disorder – Not Otherwise Specified — one of the diagnostic catch-alls that will be subsumed under the general category of Autism Spectrum Disorder in the next edition of the bible of psychiatry, the Diagnostic and Statistical Manual of Mental Disorders or DSM-5, which will be published in 2013.
To share the story of the emotional journey that his family has taken to come to terms with Sam’s autism, Todd Drezner has made a smart and deeply affecting documentary called Loving Lampposts, which is available today for purchase on DVD, on Netflix, and as a download on iTunes.
In its own understated and thoughtful way, Loving Lampposts is a groundbreaking, even revolutionary film. Instead of stoking fear and panic about an autism epidemic allegedly caused by vaccines, or promoting the efforts to “recover” children from autism through biomedical treatments as organizations like Generation Rescue do, Loving Lampposts emphasizes the Drezners’ unconditional love for their son just as he is — quirks, weirdnesses, problems at school, and all.
By talking to other parents (including those who are committed to using unproven treatments in the hope that their children will “lose the diagnosis”), pioneers of autism research like Simon Baron-Cohen, and — most importantly — autistic people themselves, the film poses a challenging question: Can you learn to love an autistic child without wanting to “cure” him?
For the Drezners, the answer is yes. Other parents — particularly those whose kids suffer from more disabling impairments or disturbing behaviors than Sam does — may not be there yet. But everyone with a family member on the spectrum should consider this film a must-see — even if they arrive at different conclusions than Todd and Erika Drezner did.
Crucially, the filmmaker does not whitewash the significant problems that even happy autistic adults face in their daily lives. Few of the men and women on the spectrum in Loving Lampposts could pass for neurotypical or “NT” — the cheeky Aspergian term for non-autistic people. They struggle with sensory overload, finding meaningful employment, and obtaining the resources to live independently outside of institutions, while facing preconceptions about autism and blatant prejudice toward their eccentric behaviors.
One woman in the film seems as attached to an old refrigerator as Sam used to be to his lampposts (now six years old, he has since moved on to other “special interests.”) Several of these men and women have significant difficulties employing spoken language — but then turn out to be positively eloquent when equipped with a keyboard and text-to-speech software, like artist Dora Raymaker, co-director of AASPIRE, the Academic Autistic Spectrum Partnership in Research and Education. This clip of Raymaker alone is enough to set to rest the notion that just because someone has difficulty speaking in the usual way, they have nothing to say.
One of these brave men and women, Sharisa Joy Kochmeister, has cerebral palsy, epilepsy, a movement disorder called dyspraxia, and Autism Spectrum Disorder. But as the former president of a self-advocacy group called the Autism National Committee, Kochmeister has been instrumental in the fight for equal employment opportunities and social justice for people on the spectrum.
This struggle has been dubbed the neurodiversity movement, because it encourages looking at conditions like autism and ADHD as natural — albeit often highly challenging and disabling — variations in human cognitive style that can convey advantages (like Sam’s prodigious memory) as well as disadvantages.
One widespread misconception about the neurodiversity movement is that it is universally opposed to all treatments for medical problems associated with these conditions, such as the development of drugs for disabling anxiety or gastrointestinal issues. But the neurodiversity community is itself diverse. Most of the advocates I know are on the spectrum themselves, and emphasize the importance of taking a variety of approaches — including making changes to public policy and the accelerated development of assistive technology such as apps for the iPad — to improve the lives of people who think differently.
In Loving Lampposts, Drezner interviews several neurodiversity advocates, including Stephen Shore, a formerly non-verbal autistic who is now a professor at Adelphi University, and anthropologist Roy Richard Grinker, father of an autistic daughter and author of an extraordinarily compassionate 2007 book called Unstrange Minds. Toward the end of the film, Kochmeister tells the filmmaker that she feels autism is “a gift disguised as a dilemma.”
In one of the most moving sequences of the film, autistic performance artist Johnny Seitz tells parents, “You haven’t got a big enough imagination for what your child could become.”
I spoke with Drezner recently about the genesis of his film and the challenges he faced in his quest to understand his son’s atypically beautiful mind.
Steve Silberman: Loving Lampposts begins with your telling the viewer about Sam being diagnosed with autism. What led up to that? What were the first signs that your son was different from other kids?
Todd Drezner: Our son had been going to a preschool for typical kids since he was a year old. As the other kids started to get older, we noticed that Sam wasn’t developing language as quickly as they were. I remember one Monday in particular when the teacher asked all the kids what they’d done over the weekend and posted the answers on the wall. The other kids spoke in sentences, but all Sam said was, “the slide down.”
Because Sam is our only child, we didn’t really know what to expect. What spurred us to get him tested was a parent-teacher conference at his day-care center. The teacher suggested that Sam was not always following what was going on in class and spending a lot of time by himself. The school thought it would be a good idea for him to get tested.
Silberman: To be tested for autism specifically?
Drezner: They didn’t say “autism.” I don’t know what they were thinking — to get Sam tested for some sort of communication-delay disorder, I suppose. So we found a place that we liked, but it was like that old Groucho Marx line about not wanting to join any club that would have you as a member — we didn’t want to get an evaluation done by anybody who had less than a three-month waiting list. So we decided to have Sam tested in December of 2006, when he was about two and a half, but we didn’t actually get it done until March of 2007.
They told us initially that Sam had “atypical autism,” which they later amended to the diagnosis of PDD-NOS. We took that to mean, “Sam’s kind of autistic, but kind of not, and who can say for sure? But he definitely needs a diagnosis.” So we shortened that just to say “autism.”
Silberman: What were your feelings during this whole process? Were you worried about your son?
Drezner: Worried is a good word for it. We had heard about autism before Sam was born, and worried a little about it — all couples worry — but we told ourselves that our son would be fine. So obviously when you find out there may be something wrong with your child, you’re worried. That word describes us.
At the same time, Sam was just a lovely child. He was easy in a way that some autistic kids I’ve met are not. He didn’t have a lot of stereotypical behaviors. The way that his autism manifested was that he would sit in a chair for an hour looking at a book and not saying a word. And we’d be saying, “Oh, our son is so easy to raise.” But then you realize that a two-year-old shouldn’t be just staring at a book for that long. He should be interacting with you. So it was a mixed bag. We loved being with Sam, and he seemed healthy. But at the same time, other people who interacted with our son all the time told us, “There’s something wrong here.” So we were concerned about that.
Pretty early on, we thought autism was a possibility, but we would also say, well maybe Sam just has a language delay. Maybe he needs an aide at the day care center and he’ll be fine. When the psychologist started telling us his conclusions, he was saying, “Sam has some difficulty interacting with the world, and he has delay in his language, and there are a lot of things that are hard for him that are not hard for typical kids.” And my wife was going, “Oh yeah, yeah, uh-huh, OK, I can deal with that.” But then he said “autism.” That shook her. That’s the power of that word.
Of course, the word autism didn’t change anything about Sam, or how he was three months before we heard that word, or five minutes before we heard it. It’s the fear built up around the word that we both felt. At the moment we heard the word autism, it was kind of surprising, even though looking back on it, it’s obvious that’s what the diagnosis would be.
Silberman: Did you then begin a self-education process, reading books on autism and getting online?
Drezner: Yeah, we got a lot of books and went online. Sometimes I think that parents’ reaction to autism depends on which website they happen to stumble on first. Of course, you can find a lot of alternative treatments and causation theories and fearmongering about an epidemic. But then you can find other websites that are less radical than that.
As I said, Sam didn’t have a lot of severe behaviors. I’ve read a lot of things by parents who talk about feeling like they’ve lost their child — that their child was one way when they were born, and then regressed and became something else. But that was not our experience. Sam was the same as he had always been, but now he had this label attached to these behaviors. So we tended to drift toward sources of information that looked at autism as a variation on typical behavior, rather than as a disease that you have to treat medically. That made a lot of sense to us, because Sam is perfectly healthy.
Silberman: So Sam doesn’t have seizures, gastrointestinal issues, or some of the other serious physical problems that many autistic kids have?
Drezner: No, nothing like that. That’s how I began thinking about making a film. I started to ask myself, “Does your conception of autism as a parent depend on what kind of behaviors your child has?” I don’t how we would have reacted if our child had regressed, or was banging his head against the wall, or biting himself, or any of those other difficult behaviors. I became curious about how other parents, who have kids more difficult than Sam, react to autism.
Silberman: I recently interviewed Seth Mnookin, author of a new book called The Panic Virus, on the anti-vaccine movement that arose in the wake of Andrew Wakefield’s discredited vaccine/autism study. Did you ever go through a period of fear about vaccines, regretting that you’d had Sam vaccinated?
Drezner: No. Sam never had a bad reaction to vaccines. Plus, I come from a family of doctors. None of them are involved in vaccine production, but they are all well versed in the science, and they told us not to worry about vaccines. The thing that you do wonder about as a parent — you read stories of parents who tried B12 shots, hyperbaric chambers, vitamins, gluten-free and casein-free diets, any number of things you could name — to cure their children. They talk about how their kid has recovered and lost their diagnosis, and it’s just like they have a typical kid. You read those stories and wonder, “Should we do it? Wouldn’t life be easier if we just had a typical kid? Maybe they’re right. Maybe we should try it. Are we not doing something that we should be doing?” So we read those stories and wondered about the treatments.
Silberman: How has life not been easy raising Sam?
Drezner: Not surprisingly, given the definition of autism, he’s very much in his own head. He has an internal monologue or dialogue with himself going on the majority of his waking hours. So he really needs to be drawn out and into social interaction with other people. That has been challenging to do, though he’s making more and more progress.
At the beginning, we would do a lot of things that just annoyed him. He had a toy that was very important to him — one of those Mozart cubes, a cube with musical instruments on it. You hit the icon for the instrument, and it plays a certain sound. Sam would make the cube go in a pattern that he liked. It was like a drug for autistic kids. We seemed to be just getting in his way, trying to prevent him from hitting the instruments that he wanted to hit. He had to move our hands or interact with us in some way to do what he wanted — that sort of thing. With all the rituals that he has, it took Sam a while for him to view us as more than just being annoying.
Today, he’s still very slow. We’re New Yorkers and we’re like, “We’ve got to get out the door, we’ve got things to do!” But Sam’s got his own pace. He’s got his own things going on in his head. He can go to the bathroom and be gone for 30 minutes because he’s reciting The Cat In The Hat to himself or thinking about something that somebody said at school two weeks ago. He is very much inside of himself. That’s the biggest challenge.
Silberman: Do you ever go back through your own development and ask yourself if you had similar traits when you were young?
Drezner: Yes. My wife and I were both the kind of people who were more likely to sit in our rooms reading a book than going out and being the life of the party. At college, my wife spent a lot of time writing papers and doing solo academic things. I was not a social animal, and I relate to that in Sam. I like that about him.
Of course, I want Sam to have friends and social interactions, but I also want him to feel comfortable doing his own thing, and not necessarily following the group because he wants to fit in. So I did relate to that, and I respect that about him. It’s hard to say at what point he crosses over from normal behavior into autistic behavior. Definitely, once we got the diagnosis, we looked back at ourselves, and at other members of our family, and saw some traits that seem more fully expressed in Sam.
Silberman: How did you start thinking about making a film?
Drezner: I was out with Sam in Prospect Park, and he had developed this fascination with lampposts. He liked to go up to them, look up at them, touch them, and caress them. We still haven’t figured out exactly what he likes about them, but there’s a circuit of four lampposts in particular that he likes to visit. I had edited some other documentaries previously and wanted to do one of my own. It was just sort of a flash of insight that this obsession of Sam’s would be a way into talking about autism, because it gets into some of the core questions that people are asking about it.
Sam’s love of lampposts is clearly autistic behavior. It’s not something that a typical kid does. One side of the neurodiversity debate might say, “That’s autistic behavior and you need to try to get rid of it.” Another side — the pro-neurodiversity side — would say, “Well no, it’s not typical behavior, but it’s not harmful, and you should let Sam have this fascination if it makes him happy.” Given how much has changed in the last ten years about how we think about autism, I thought it might be time to do a film that looks at autism’s place in the culture.
Silberman: Did you have any personal revelations in the course of making the film?
Drezner: One of the biggest revelations came very early on, when I went to the Autism National Committee conference. The Autism National Committee is very much on the neurodiversity end of this debate, so they really try to accommodate autistic people. Their president is autistic, and they have autistic people on their board. I interviewed Sharisa Joy Kochmeister, who had just been elected president of AutCom. Sharisa doesn’t speak, so she uses a computer to communicate. She gave a presentation at the conference with her father, who read her poetry and parts of the memoir that she’s working on.
The contrast between Sharisa’s outward appearance and what’s going on inside of her is bigger than anyone else I’ve ever met. She has disabilities that make her type very, very slowly, and she hums constantly. When other people are talking, you can’t even tell if she’s paying attention or not. But then she’ll type something that makes you understand that there is something going on inside of her that is definitely not apparent to the outside world. Near the end of the film, Sharisa says that autism is “a gift disguised as a dilemma.” Hearing that from an autistic adult — someone whom everyone else would look at and say, “Wow, that woman is in terrible shape” — was a huge eye opener.
Silberman: Sharisa’s statement about autism being a gift disguised as a dilemma has haunted me too. I have to say, I found myself annoyed by a press release put together to promote your film. The headline was Autism: Devastating Illness or Neurodiversity? But it’s not a question of “or,” of autism being one or the other — it’s both, in proportions that depend upon the particular person. And the ways that society supports or doesn’t support the practical needs of that person play a significant role in how devastating it is in their life. For a non-verbal autistic person, assistive technology like text-to-speech software can make a big difference in how much the world is aware of what’s going on inside them, as you found with Sharisa.
That’s one of the hardest things for some people to wrap their minds around: most neurodiversity advocates are not denying that autism is a disability. Every neurodiversity advocate I know — most of whom are autistic themselves, the parent of an autistic person, or both — is aware that autism can be profoundly disabling; as Sharisa put it, “a gift disguised as a dilemma.”
Drezner: I agree. Every time I said in the film that autism is a difference, I was careful to say that it’s also a disability. Sam struggles with things that typical kids don’t, and there are many other kids on the spectrum who struggle much more than Sam does. It’s not acceptable to say, “It’s all just a natural variation of the human brain, and all autistic people need is acceptance.” Certainly no one that I know would ever say that being autistic is “just a difference” about a kid who is injuring himself.
Some people misunderstand that about neurodiversity. When you say, “We have to accept autism,” they hear it as, “It’s OK that my kid bangs his head on the wall? It’s OK that my kid doesn’t sleep at night? It’s OK that my kid is in pain?” But that’s not what neurodiversity advocates are saying.
What neurodiversity is saying is that we should definitely be working on relieving all of those problems for our kids. Hopefully, with help, these problems will improve. And when they do, you’ll still have an autistic kid. How are you going to support your child so that he or she can live as fully as possible, given the fact that they’re always going to be autistic?
Silberman: That’s a very different perspective from the one taken by organizations like Generation Rescue that emphasize finding cures for autism, claiming that “Autism is reversible.” You interviewed Jenny McCarthy in the film. Where did that happen?
Drezner: That was at the National Autism Association Conference in Atlanta back in 2007. Jenny McCarthy was on the exhibit floor, so I asked her if she would be able to do an interview and she gave me about ten minutes.
Silberman: How was the conference?
Drezner: I disagreed with a lot of what the community there had to say about autism, but at the same time, I felt that all the parents I spoke to were trying to do what they thought was best for their kids. I try not to judge. It’s hard, and everyone’s trying to do the right thing for their kid.
I felt less empathetic toward the vendors. There were advertisements for buying your own home hyperbaric chamber for $16,000, getting your own sauna, expensive vitamin regimens, and all sorts of other things that are used to treat autism but have not been scientifically proven. There’s definitely a whole industry thriving around autism. I felt uncomfortable with that. But I don’t know how I would have reacted if Sam had much more challenging behavior or seemed to be sick. It’s hard for me to say what I would do. So I try not to judge what other parents do.
I think we’re still dealing with the legacy of Bruno Bettelheim and “refrigerator mothers.” It was a huge step forward when [Autism Research Institute founder] Bernard Rimland came out with his response to Bettelheim in his book Infantile Autism, saying that, in fact, autism is biologically determined rather than psychologically determined. I think some of what we see in terms of autism allegedly being an environmentally caused disease is a reaction to Bettelheim’s history of blaming parents for their kids’ disorders.
When you start talking about neurodiversity, some people can misinterpret the concept and feel like you’re saying that if they just accepted their children as is, or loved them enough, everything would be fine. There’s plenty of guilt in parenting a typical child — let alone one who struggles. Parents are very sensitive to anything that sounds like you might be blaming them. Given that the whole early history of autism was about blaming parents, I think we still see a lot reaction to that today in the insistence that autism has to be primarily environmental, when it’s probably both genetic and environmental.
Silberman: What practical steps could we take to achieve a more equitably neurodiverse society?
Drezner: A lot of what we see in mainstream media presents autism as a tragedy, a disease we have to defeat — every parent’s nightmare. We need to see more stories about people who don’t feel that way. We need to hear more from autistic people who are living meaningful lives both despite and because of their autism.
It would be great to hear from more autistic adults. The focus now is almost entirely on children. You never hear about autistic adults, but when I started looking for them for the film, it wasn’t hard to find them. A lot of parents of autistic kids have a problem that parents of typical kids don’t have: imagining their kids as adults. Parents of typical kids can look around and see any kind of adult and think that their child might grow up that way. Parents of autistic kids can’t do that. That leads to them imagining that their very disabled kid will always be very disabled, and always have the same level of difficulty. We need to see more autistic adults who are doing OK. We need to change the dialogue about autism.