Neurotypical and Jenny McCarthy: One of These Deserves the Autism Soapbox by Tom Roston
In the cultural marketplace of ideas and views, we’re constantly exposed to buzzfeeds and blowhards. It’s so rare that the space is cleared for truly nuanced, thoughtful and unique perspectives. Documentaries tend to be a great way to fill that void.
And for anyone and everyone who was appalled at the news that the ABC show The View anointed Jenny McCarthy, the celebrity mother of an autistic boy, to be a co-host, there is a doc antidote: Neurotypical. Watching this POV documentary is a way of cleansing yourself of the artifice, bad faith, misdirection and plain stupidity that McCarthy conjures with her dead-wrong belief that vaccinations are the cause of autism.
It’s such a shame that the limited time that is spent discussing autism in the mainstream press often focuses on McCarthy, the latest being ABC’s stunning decision, earlier this month, to give such a public platform to a celebrity who has no scientific basis for her belief and has helped maintain a myth that not only endangers lives — because of exposure to diseases that vaccinations would have rendered harmless — but also seriously screws up the thinking of families who live with people with autism.
Now, I know I’m adding to the attention given to her, but I only do so as a way of shining a light on Neurotypical, because I think it’s relevant when you consider that the film is all about giving people with autism the space to express their views. We so rarely get to hear from them.
Watching the film, I was moved by how Wolf, an articulate guy who’s on the spectrum, talked of us neurotypicals (people without autism). And I was floored by how John described the existential import of the game of tag — a perspective that can only be rooted in his very different way of looking at the world.
Those are the viewpoints that should be heard, but, instead, it’s McCarthy who gets so much attention to spread her stunningly irresponsible message. Her co-hosting gig of The View starts in the fall, but I’m hoping that the public outcry protesting her selection could change ABC’s commitment to her.
You can just bet that McCarthy’s controversial status was well considered when ABC executives picked her. Whether or not her contract stipulates that she can or cannot talk about autism, I can assure you that either course will be used for ultimate impact. She’ll either make a well rehearsed and highly publicized announcement that she won’t be discussing the issue as an act of noble high-mindedness or they’ll put on a reasoned discussion relying on the good old American value that everyone has a right to their opinion.
But they don’t! Not fascists. Not bigots. Not, in my opinion, even climate-change deniers. And definitely not her. Take her off the show and let John and Wolf have a day to share their views. That’s what I’d like to see.
It’s no coincidence that POV — point of view — has aired Neurotypical. That’s because POV promotes points of view that are well considered and resonant. The View simply relies on viewpoints that hook eyeballs to the screen. But not all views should be trusted.
So, I hope you’ve seen Neurotypical. As I said in a post a year ago about the same subject (“A Neurotypical’s View on Autism Documentaries,” no less), I can’t claim to know this subject like those who live with it. But that doesn’t mean we neurotypicals can’t be open to their views.
SALON - 7/29/13
Are any of us really “neurotypical?” If you're close to someone with autism (as I am), the fascinating PBS film "Neurotypical" is a must-see by Andrew O'Hehir
As millions of parents have found out before me, having a child on the autism spectrum makes you ask yourself all sorts of questions. These include: How normal am I, and how do I know? Where is the dividing line between “neurotypical” responses and those that suggest autism? Is it better or worse that we now have a label to attach to a large subset of children and adults who previously would have been viewed through some other prism, as being odd or poorly socialized or mentally deficient or even insane? (Or, for that matter, as geniuses: Some people have hypothesized that autism is an evolutionary mechanism for producing scientists and engineers, who even when “normal” are not noted for their social graces.)
I sympathize profoundly with every parent or family member who resists diagnosis and labeling and the entire taxonomical effort of the scientific-medical bureaucracy, especially since it’s of such limited usefulness to people with autism and their families. I have been there, I promise you. Every child with autism is different (just as every child of every other variety is different), and no parent wants to see a unique and precious individual for whom they would gladly lay down their life be reduced to a cryptic line of psychiatric gobbledygook. If the phrase “PDD-NOS” strikes a chord with you, I’ve been there too. All the same, I would answer that last question above by saying yes, it’s much better that we have the label. It has almost certainly prevented unnecessary suffering, but we have to be honest about the fact that we don’t really know what it means.
In Adam Larsen’s documentary “Neurotypical,” which airs Monday night on PBS stations and streams for the next month on the “POV” website, we meet a middle-aged I.T. professional and autism advocate named Wolf, who talks about the way his middle-class African American parents freaked out when he failed third grade and had to repeat it. It was a moment, he says, when he began to understand the inscrutable demands of the world around him: When people taught you things, you were supposed to retain the information and summon it up on command. When a doctor who figured out that Wolf was probably autistic asked him how he’d been doing so well up to then, nine-year-old Wolf explained that he had worked out systems to respond to everyday situations – in fact, a “system of systems.” Whoever that Southern doctor was in 1970-whatever, God love him, he told Wolf to keep on developing his system of systems, and told his family that whatever they were doing to support him was working pretty well.
The result of all that system-building was an adult man who has turned what could have been a severe disability into a source of strength, and who has led what society considers a highly functional existence. But here is my question: Don’t all of us, every day, respond to social interactions with learned scripts and systems of systems? Granted, the process is not usually as conspicuous or as difficult as it was for Wolf, who says he has never had an intimate relationship because he finds it acutely painful to be touched. (And thereby has avoided the single most troublesome aspect of human life.) I suppose those of us who become sorority presidents and network news anchors don’t feel social unease at all or, more likely, have learned to squash it with superior willpower. But I suspect the vast majority of human beings feel moments of social awkwardness and even profound alienation. I certainly identified to some degree with the young woman in “Neurotypical” who explains that she had to learn that making small talk at a coffee shop or in an elevator was an important social leavening agent, and did not necessarily mean that other people were blithering idiots who had nothing more important in their heads than the weather, the traffic and celebrity gossip.
Or maybe that’s just me. In contemplating my son’s autism diagnosis and the personality of his twin sister, who is neurotypical but distinctly peculiar, I’ve thought a lot about the psychoanalytic notion that mental illness is just an exaggerated form of normal behavior. (A normal person, Freud observed, is only “normal on average,” and some aspects of his or her personality will approximate those of a psychotic person.) Autism strikes me as philosophically and perhaps medically similar, and like any other parent of a child with a diagnosis, I’ve begun to wonder about my own position on the neurological spectrum. There’s little doubt that I qualify as neurotypical (as does my wife), but at times I identify strongly with our son’s behavior. Some people have begun using terms like “neurotypical but odd” to indicate those of us who lack the clear behavioral markers of autism, but feel a milder version of the same struggle to engage the social world in appropriate and expected ways. No doubt that lacks scientific rigor, but there isn’t much of that to be found in this field at present (although brain research is pushing the boundaries of knowledge further every year).
When my son takes over the dinner-table conversation with an extended monologue about electronics or computer programming, well past anyone else’s capacity to pay attention or even feign interest, I think to myself: Hell, I’ve done that too, more often than I’d like to admit (although with different subject matter). My father, who was a prominent academic in a specialized field of linguistics understood by almost no one, did it virtually every night. On the other hand, when my son wanders away on a crowded Manhattan street because he’s noticed a model of corner-bodega ATM he’s never seen before, I think: I don’t get this kid. (At age 4 or 5, he liked to stage sneak attacks on the checkout registers at the rural supermarket in our upstate New York town, wiggling under the counter while the adults were distracted and joyously beginning to ring up imaginary transactions.)
One problem with the term “autism” is that it encompasses such a wide range of behaviors and responses that it can seem completely contradictory: Wolf can’t stand to be touched, but my son craves physical contact of many kinds; some people with autism disorders rarely or never speak, while my son has quite the opposite problem. “Neurotypical” is an important film because it’s largely told from the perspective of people with autism, talking about their strategies for communicating with the so-called normal world. My wife uses the expression “hacking autism,” which in our son’s case isn’t even a metaphor; at a recent family reunion he went around the house with an iPad, taking pictures of his aunts, uncles and cousins and labeling them. (He now understands that he has unusual difficulty attaching names to faces.) Most of the interviewees in Larsen’s film are adults and teenagers who have developed a sophisticated understanding of the neurotypical universe and can discuss it with considerable wit. I especially enjoyed the cynical perspective of a long-haired, thirtyish guy named John, who explains that all you need to do to hold a convincing conversation with a neurotypical person is to say the other person’s name a lot – “their favorite word in the whole wide world” — and repeat the last three or four words of whatever they just said. I’m afraid that’s distressingly accurate, and by the end of the film John has successfully acquired a neurotypical girlfriend. Then there’s Maddi, a teenage girl who talks about expending a lot of time and effort on overcoming her discomfort with eye contact, only to discover that in high school the cool kids never make eye contact anyway.
I found all these stories both fascinating and richly valuable, including the film’s portraits of two marriages between autistic and neurotypical people, one of them apparently thriving, the other evidently on the rocks. I’m going to get hold of a digital copy and show it to my son when he’s a couple of years older. These histories may seem less useful, however, to someone like Richard Everts, the director of a moving travelogue film called “The United States of Autism” and the father of an adolescent boy who hasn’t spoken for more than 10 years. All people with autism, no matter how “high-functioning” society deems them to be, will struggle with social communication for the rest of their lives, but there’s no question that for some people along that wide spectrum the barriers are more daunting and the hacks more demanding.
Perhaps “Neurotypical” should be watched along with Everts’ film or, better still, Gerardine Wurzburg’s remarkable 2011 documentary “Wretches & Jabberers,” which captures the world travels of two largely nonverbal middle-aged autistic men who spent most of their lives isolated in institutions before learning to communicate through electronic devices. That film hit me with the force of revelation – those men had been assumed to possess low intelligence and poor cognitive skills, which wasn’t remotely accurate. It also offers one of the few unambiguously benevolent uses of computer technology. A quarter-century after“Rain Man,” which depicted (with reasonable accuracy) a version of autism so rare it probably affects 1,000 or so people on the planet, we’ve come a long way in understanding a set of syndromes that may reflect a heightened version of social difficulties we all share. But people with autism still have so much to teach us – and not just, as I will remind my son at some point today, about programming in C++ or building paper airplanes.
LA TIMES - 7/29/13
Review: 'Neurotypical' an engaging look inside autism by Robert Lloyd, Los Angeles Times Television Critic
The key to "Neurotypical," Adam Larsen's engaging film about autism from the inside, is in the title, a word that some "on the spectrum" use to describe people the world calls normal.
It's a word with a little attitude built into it: "That is so neurotypical," no one here actually says — though some of the autistic speakers do indeed regard the nonautistic with something of the amused, bemused pity with which Spock once beheld Kirk.
"I look at neurotypical life," one tells Larsen, "and I'm sorry, I really don't want to be one of you." Another, befuddled by the phenomenon of small talk: "I thought most of the rest of the world were idiots with no thoughts."
Premiering Monday on PBS as part of the documentary series "POV," its interest, from both sides, is anthropological, not clinical. There is some talk of medicine — parents weigh the pros and cons of putting their daughter on drugs, an autistic activist cautions against "chemical straitjackets."
But Larsen's interest is in how people with different world views get along. (Sometimes, as in one mixed neurotypical-autistic couple, who manage to stay delighted by their differences, very well; sometimes, as in another, who feels that his wife's recent Asperger's diagnosis gives her an unfair advantage in their relationship, less so.) Shot largely in Virginia and North Carolina, because that's where the filmmaker is from, "Neurotypical" — which does not identify any of its subjects or speakers until the end — runs on the testimony of the autistic and those who live with them. There are no expert voices, except as experience equals expertise.
If Larsen's subjects don't present the full range of what for good reason is called a spectrum — only language-challenged 4-year-old Violet is incapable of reflecting upon her state of mind — we get a sense of varied experience, of humor and of desire: "It is possible," says one young autistic woman, "to be romantically involved with other people. Just because Temple Grandin doesn't do it doesn't mean it never happens."
Some reveal their strategies for coping in the rarely straightforward straight world, masquerading when necessary, as "pseudotypical," finding ways to put the rest of us at ease. These can be amusing; one repeats the last three words of his interlocutor's last sentence, to signal interest, and has developed a workable methodology of neurotypical flirting. ("But I really don't know what I'm doing," he admits.)
The point, which is never stated but the whole of Larsen's film embodies, is that we are all on some sort of spectrum, whatever our diagnoses or lack of them, each with a uniquely wired brain and an individual way of interpreting the world and coping with it, and each with a gift. ("I believe that oddness results in cultural content," says John, a fiddler with Asperger's.) However much we seem to speak the same language, we are all foreigners, struggling to communicate.
SOUTHCOAST TODAY - 7/29/13
'Neurotypical' turns the tables on autism by Kevin McDonough
Imagine yourself laughing while watching a film about autism. While so many discussions of the disorder focus on heartache, "Neurotypical," a documentary on "POV" (10 on PBS, TV-PG, check local listings), discusses life from the point of view of autistic people. And their take on normal, or "neurotypical," society is quite remarkable, revealing and even funny.
Now middle-aged, Wolf works in information technology and treasures his differences from the neurotypical. He acknowledges that his family's support was essential for him to learn the tricks to adapt to a society where people can read and interpret nonverbal cues and emotional smoke signals that remain beyond his comprehension.
Maddi offers a typically sassy high schooler's view of life with autism. She "wanted to barf" when she heard that "Grey's Anatomy" has chosen to introduce a character with Asperger's syndrome. (I'd love to hear her take on "The Bridge.") She complains that she spent the better part of her childhood being trained to make eye contact with her peers only to enter middle school, where everybody looks at the floor. She says she wants a boyfriend, joking, "Just because (autism advocate) Temple Grandin doesn't do it, doesn't mean it doesn't happen."
We meet several adults who were only diagnosed well into midlife. Many speak about the gimmicks and strategies they've developed to comprehend other people and their need for social and physical intimacy.
One man describes a system for ingratiating himself with boring conversationalists that seems worthy of a self-help seminar. A college-aged girl was convinced that every stranger she met was an idiot, until her father explained to her that meaningless chitchat about the weather or having a nice day was a social lubricant for "normal people" and made them feel happy. The banality of this practice still mystified her, but at least she understood it.
A middle-aged musician and philosopher describes a playground game of tag from an autistic child's perspective in a tangential riff worthy of a standup comedian. His outsider's view of this most innocent form of play is a wonderful example of this film's poignancy and humor. Told by his teacher to go with the other kids and "frolic," he reflected that he just didn't have that gene.
OPEN AIR - 7/29/13
POV’s ‘Neurotypical’ Examines What It Means To Be ‘Different’ by Rick Ellis
The toughest thing about being a parent is the not knowing. No matter how much you prepare, no matter what plans you make, there are things that will happen that hit you out of the blue like a freight train. It’s scary enough to realize that you’re responsible for the well-being of a little human being. It’s even more harrowing to face that task when your child has a disorder they will carry with them their entire lives.
When I learned four years ago that my son Sam had Aspergers, I put on a brave face for my wife and family. My wife and I dived into learning everything we could, from medical options to therapy methods and training exercises. I never let my wife see me get upset and I always made sure that I was nothing but positive for my son. Because when you’re dealing with autism, it’s important to be both rational and optimistic. From the beginning we believed our son would end up living a full and reasonably normal life.
But there were times when I would sit on the floor next to his bed at night and cry. Not because I was sad for him or felt sorry for myself. Although like most parents with an autistic child I couldn’t help feeling that somehow it was my fault. But I cried because I loved my son and I knew that he was going to have some tough times. There were going to be some challenges that would test him and situations where he would feel alone and lost. He could have a full life, but there were going to be some tough days getting there. And at the end of the day, I couldn’t protect him from everything.
I thought about those days a lot after watching Adam Larsen’s Neurotypical, which will be available online for streaming beginning on July 30, 2013. The documentary is an exploration of autism primarily from the point of view of those with autism. Every person with autism occupies a slightly different space on the autism spectrum and those differences mean that each person’s story is different. Neurotypical takes a look at a few of those stories and the results are a documentary that is sad and joyful and hopeful and heartbreaking.
Viewers are introduced to 14-year-old Nicholas, who seems like a perfectly normal boy from the outside. But his autism leaves him struggling with feelings of alienation that threaten to derail his life. High school senior Maddi wants a relationship, even as she wrestles with the challenges of social behavior. “Just because Temple Grandin doesn’t do it, doesn’t mean it doesn’t happen,” she explains, referencing perhaps the world’s best known person with autism.
The film raises the question of what it means to be “normal” and whether autism is a sign of dysfunction or just another slice of understanding the fundamentals of being human. In fact, some of the people in the film have not just come to terms with their autism, they wouldn’t want to be any other way. Wolf is a middle-aged autism advocate that has an extreme sensitivity to touch and at one point admits that “I look at neurotypical life and I’m sorry, I really don’t want to be one of you.”
For the record, my son is now eight is spending more and more of his school day in a mainstream class. He’ll be okay, but like the people in this film, what form okay will take as he grows up is still a question without a clear answer. But what is certain is that whether or not you have a family member with autism, Neurotypical is a must-watch film.
CHANNEL SERF - 7/29/13
Autistic persons reject pigeonholing in ‘Neurotypical’ on PBS by John Crook
Filmmaker Adam Larsen — whose acclaimed one-hour documentary Neurotypical makes its national broadcast premiere tonight on the PBS series POV — grew up in western North Carolina, where his father has worked in the field of autism for 20 years. Given that upbringing, it’s not surprising that Larsen became strongly irritated by what he perceived to be a social double standard when it comes to persons living with autism.
“(There was) either a pervasive need to make people into a rendition of something ‘normal,’ or a tendency to sensationalize the extremes of autism,” he explains. “Documentaries at the time were either clinical, focused on cause and cure, or dramatic, looking at the ‘tragedy’ of autism or the brilliance of the savant.”
In contrast, Neurotypical — which takes its title from the term many autistics use to refer to so-called “normal” people — explores the experiences of people with this neurological condition largely from the perspective of the autistic persons themselves.
The exception is Violet, the high-energy 4-year-old who is going through a rough patch with her family as the film opens because her lagging communication skills make it difficult for her to express her wishes clearly, often triggering frustrated temper tantrums. The rest of her family generally copes well with Violet’s bad days, but her parents are confronting a thorny question faced by anyone with a special-needs child, namely, which part, if any, medication should play in the child’s treatment.
Shy 14-year-old Nicholas, meanwhile, is wrestling with the usual angst that any teenager must deal with, but his feelings of alienation are magnified by his autism, which leaves him feeling lonely and unable to relate to his classmates, especially girls. He’s still in the process of figuring out a skill set that will help him understand and interact with people whose neurological wiring is simply different from his own.
Nicholas certainly isn’t the only autistic person to find dating a daunting proposition, however. Some major components of human courtship, such as flirting, rely heavily on non-verbal cues that a person with autism may not pick up on. John, a long-haired adult whose casual conversational style doesn’t even hint at his Asperger’s diagnosis, reveals that he has come up with an easy trick to gauge whether his date is receptive to a goodnight kiss. He simply touches her hair and comments on its softness. If the woman pulls back from the gesture, he doesn’t go for the kiss.
But then John, like many in his neurological boat, adamantly refuses to view his autism as a disability. Instead, interacting with Neurotypicals becomes a kind of game. For example, he has developed a reputation among friends as an excellent listener simply by waiting until a speaker pauses in his conversation, then repeating the last three or four words the other person has said, to indicate fascination. “They’ll go on for hours, and they will talk about you as if you were the greatest thing next to the iPhone,” he says, laughing.
Katie, in her 20s, also laughs when recounting how she had to train herself to participate in small talk with others. When she was younger, she confesses, she thought she was surrounded by idiots who had nothing of interest to say because they seemed so interested in trivial things like the weather. Now that she understands what’s behind that social convention, she happily engages when someone wants to chat.
Wolf, a middle-aged autism advocate, admits that he is perfectly happy without being part of a physically intimate relationship because he is extremely sensitive when it comes to touching. Like Nicholas, however, high school senior Maddi admits she would love to experience a full-blown relationship, adding wryly, “Just because Temple Grandin doesn’t do it, doesn’t mean it doesn’t happen.”
Maddi also reflects on how she was excited to learn hear that Grey’s Anatomy was going to add an autistic character to the cast, until she noticed that the character seemed to exist mainly to teach the Neurotypicals around her how lucky they all where. What Maddi wanted to see on TV instead was an autistic character exploring a full range of human experiences, because that’s what she wants from her own life, too. Like so many of the people spotlighted in this engaging and surprisingly funny hour, Maddi doesn’t see herself as damaged or diminished, simply different.
ASHEVILLE CITIZEN TIMES - 9/13/11
From the Eyes of the Autistic by Arnold Wengrow | Asheville Citizen-Times correspondent If you think you know about people with autism from films like “Rainman,” “Forrest Gump” and “Temple Grandin,” psychoeducational therapist Catherine Faherty has another film she wants you to see.
Faherty works with autistic children and adults and their families at Asheville’s TEACCH Center, one of nine regional centers for Treatment and Education of Autistic and Communication-related Handicapped Children, run by the UNC Medical School.
So many films about autism are “ideas from the filmmaker's head,” she said, “not from the point of view of the person with autism.” That’s why Faherty thinks a new documentary, “Neurotypical,” by Asheville filmmaker Adam Larsen, is “breaking new ground.” It shows at the Fine Arts Theatre on Thursday and Saturday.
“Neurotypical” lets people on the autism spectrum tell their own stories, as it interweaves the lives of a child, a teenager and an adult newly diagnosed with autism. “It’s so valuable to hear from them personally how they see the world,” Faherty said. “There’s no way someone not on the autism spectrum can imagine that experience.”
Faherty says the characters in “Rainman” or “Forrest Gump” don’t capture what’s going on inside an autistic person’s mind.
Neurotypicals, a term people with autism use for nonautistics, “understand at an early age that other people have their own thoughts and feelings,” she said. Autistic people may not have that understanding and typically cannot read subtle cues of mood and emotion from verbal nuances, facial expressions and body language.
That leads to many communication problems. For example, looking at your watch may not tell an autistic person you need to end a conversation.
“The most respectful way to communicate” wtih an autistic person, Faherty said, “is to be clear, concrete and literal. Say what you mean and mean what you say.” For most people, “I can’t talk to you anymore” sounds rude. For an autistic person, she said, that directness is “refreshing.”
Besides learning about autism, Faherty hopes people will see “Neurotypical” for another reason. The screening benefits a new scholarship program at TEACCH, which has seen its budget shrink steadily over the past five years.
Since 1972, the Asheville center has offered diagnostic and educational services without charge to 12,000 children and adults. “For the first time,” Faherty said, “we’ve been told we have to start charging.”
Larsen was hoping to show “Neurotypical,” his first feature-length film, in his hometown when he learned that TEACCH needed to help its clients financially. A benefit was the perfect opportunity to do both. A 1998 Asheville High graduate, Larsen knew people with autism through his father, Ron, then a teacher at TEACCH. “As a teenager, my family hosted get-togethers for autistics to socialize in a supportive environment,” he said. “I got to know many wonderfully unique individuals through their personalities rather than their diagnosis.”
Since completing film studies at the N.C. School of the Arts in 1998, Larsen has worked as a freelance cinematographer on projects from cooking shows to extreme sports and as a projection designer for live performances.
He decided to make a documentary about autism, he said, because “I noticed a huge disparity between the media’s portrayal of autistics and the individuals on the autism spectrum that I grew to know. Most of the documentaries about the subject were clinical. I wanted to make a documentary from their perspective.”
His parents, Ron and Linda, now own Shoebox Tasks, an Asheville company that employs people on the autism spectrum to make educational tools for people with autism. They have been producers for “Neurotypical” during its four years of filming, editing and post-production.
The film premiered at the Thessaloniki Documentary Festival in Greece in March and has since been shown in Vancouver, New York and Albany, N.Y.
Early this year Larsen previewed “Neurotypical” for Asheville members of the autism community and friends, including Gene Felice, an artist and designer who teaches at the Odyssey Community School in Montford.
For Felice, the film was “a real lesson on what is it feels like to be categorized as very different from everyone else and being told this is a problem that we need to get rid of, instead of this is a different kind of person and we need to relate to him differently.”
That’s a lesson that, by serendipity, he particularly needed to learn. Two days before he saw the film, his 5-year-old nephew was diagnosed with autism.
What’s It Like to Have Autism? The documentary Neurotypical reveals the world through the eyes of autistics. by Kristen Dunleavy
When we encounter anyone with a disability, one of the first things we might assume is that they’re not like us. Neurotypical, a new documentary by director Adam Larsen, aims to eradicate that notion once and for all. (Neurotypical is a label for people who are not autistic.)The film focuses on the lives of children and adults alike with varying degrees of autism to give an honest portrayal of their everyday lives. Below, Adam explains why he was compelled to show this perspective on autism and why we all should consider expanding our understanding of what it is to be normal. Why did you decide to film a documentary about autism?
Growing up, my father worked for the North CarolinaTEACCH program, a state-funded organization that works with families of those with autism. We would have social group gatherings at my house, which means individuals from all over the spectrum would come over the house and we’d have food and play games. So from an early age I was exposed to the world of autism through the people, not through any sort of diagnosis. I became friends with individuals on the spectrum before even considering that they’re neurologically different in any kind of clinical way.
I went to film school and because I had a connection with autism through my father, I really felt there was this great disparity between the way the media and movies represented individuals with autism. They would represent them in a clinical manner; rarely do you get to see the personality of someone with autism, and their reality and their perspective. I felt there needed to be a documentary that was from their perspective. Upon graduating from school, I had this idea in my head to do that film. It still took a number of years before it happened, but it did and I ended up collaborating with my father on it.
After filming this documentary, did you feel like you had more in common with people with autism and was it a goal of yours to help your audience feel connected with them?
I think we all have a lot in common with autistics and neurotypicals alike. The media says how different we are, and there are big differences especially when you get into individuals who are more severe on the spectrum, who are nonverbal. But because it is a spectrum, there is a huge range of qualities that make up any individual, neurotypical or with autism. My initial goal was to allow those with autism to speak for themselves and share their perspectives and experiences. You weren’t looking at them through the lens of their diagnosis. You were able to consider them as functioning humans.
Autistics and neurotypicals share many commonalities. There are certainly extremes that autistics express where they have difficultly managing sensory inputs and stuff like that, which we as neurotypicals have an easier time managing. That was one of the things I found in filming, I really did connect on wonderful levels with all these individuals and their various personalities. I’m happy that people can relate to the people in the film. We no longer have this black and white perspective of who an autistic person is. We can expand the range of what is considered human in general. Humans have many shades to them.
How did you go about recruiting your subjects and making sure everyone was comfortable being on camera?
One of the benefits of my father working with the TEACCH program is that he knew many individuals. We filmed about 30 interviews initially. I knew many of those people and I started putting the word out on message boards and chat rooms for autism and Asperger’s. I had a pretty healthy response. One of the benefits of not having a film crew is that I’d show up alone with a camera and a light and I could find out what that individual’s comfort level was and make an environment for them to tell stories and talk about their experience. I was able to get these intimate portraits because I wasn’t intrusive in filming. I didn’t have a big crew or anything like that.
Jonathan, a dyslexic, brought up the notion in the documentary that parents want to help their disabled child learn, but there is a fine line between being a parent and being a trainer. Would you agree?
Absolutely. If you’re researching ways to aide and benefit your child, if you look online there’s a number of ways of possible ways to go about that. It’s overwhelming. A lot of these methods are very persuasive and very aggressive. Not to say that aggressive therapy can’t show results, because I think if you work hard enough with someone, they will show improvement. I come from more of a holistic background, and the goal is to reach individuals where they are so it’s on the therapist to grow as much as the child is.
I think there is a fine line between the effort that goes into having your child succeed to their best ability in this world, and also being a parent. It requires an intense amount of work, especially early on for a child to develop the skills to succeed. I’m not a parent, so I can’t say for sure, but I know in talking to parents that I interview, they go back and forth from having great moments where they feel like a mom and other moments that are incredibly challenging and their child is going through a lot of stress. At that point they’re trying to solve their behaviors, in which case they may feel more like a trainer.
Five-year-old Violet’s parents said that they didn’t want to have Violet diagnosed as autistic because that would ultimately limit her. On the other hand, Paula, who is older, seemed to benefit from her diagnosis. Do you think that the benefit of getting an official diagnoses ultimately depends on the individual?
Absolutely. I think that can come at any stage of life. Nicolas from the film isn’t officially diagnosed with autism, but he’s aware of being different. His parents have allowed him to come to terms with his differences at his own pace. I think that’s really important. I think in the case of an individual like Violet, a diagnosis could help her parents get benefits to help her in school. It can help her succeed better. In Nicolas’s case it might benefit him to know how he might navigate socially in his world, but a pronounced difference might keep him away from his peers. They might ostracize him as a result of his difference. I’ve met many adults who’ve said diagnosis was a wonderful thing, because it gave them a better way to understand who they were and why certain relationships didn’t work out or why they had sensitivities in certain areas. They had a community, so they didn’t feel as isolated and alone as they had previously.
Do you also think that the benefits of medication vary from person to person?
Definitely. Many individuals with Asperger’s and autism suffer from depression and even anxiety. Parents with children sometimes find that medication is important to help their children cope and succeed. It can benefit the family sometimes if the behaviors are really extreme. As Wolf says in the film, medication should only be used to help someone work smart and succeed. If it’s used to calm someone down so they aren’t truly themselves, then I think it’s a really bad use of it. Many autistics who may not feel connected as to society as neurotypicals often do deal with depression, so whether or not they turn to medicine is up to them.
In the film, a middle-schooler named Maddi said: “If people are normal, they can act however they want, if they have a syndrome people want to change them.” Do you agree?
I think it’s a really smart statement that Maddi gave, especially from a middle schooler. In middle school, you deal with fitting in and trying to find your place. Middle school is a perfect bell curve for everybody’s differences. You have the popular crowd, you have the middle-range crowd and you have the nerdy crowd. It can be really true.
With special education, there’s this strong desire for remediation and teaching kids to learn the skills and behaviors to fit in. Special education lumps these people with varying abilities into one classroom. It’s incredibly problematic. You might have an individual who is incredibly smart lumped together with someone who has a major learning disability. She’s talking about being in special education where she’s learning social skills, like eye contact. It’s these sorts of things that she considers manners, and good manners. Her peers don’t ever have to learn that. In her case, it’s definitely very true.
How do you feel about the highly controversial notion that environmental factors and vaccines cause autism?
In making this film, I wanted to avoid any sort of clinical representation of autistics or data. That’s why I focused on people and didn’t focus on numbers. I personally don’t see any correlation between these claims, but I wanted to make a film about the people where you were not looking at that person through a lens of figures or data. You were hearing them tell their stories and their experiences.
Wolf says at the end of the documentary that he would never want to be neurotypical, because he’s happy the way he is. Do you think that in our society we associate our notion of normal with happiness too much?
I think to a degree, yes. Neurological differences are really hard to relate to. It’s easier for us to see an individual in a wheelchair as physically handicapped than to put ourselves in their shoes and imagine what it might be like to be put in their situation. When you’re sick, it’s practically impossible to imagine how it is to feel good. We’re present-tense individuals. I wouldn’t necessarily say we attribute being normal to being happy, but I think neurological differences are scary. If you see someone who is exhibiting behavior that is not normal, it’s scary. A goal of the film is to have people expand the idea of what normal is.
What was one thing you learned about autism that surprised you after making this film?
I think it’s interesting that I initially set off to make a really stylized film. I’m a cinematographer and I was imagining delving into the world of autism in a really stylistic way, having the audience feel what it might be like to have autism. I started realizing that with any style I wanted to attach to it, I needed to strip it away. I needed to represent these individuals as honestly as possible. That’s why it’s a relatively simple film and the editing is quite minimalistic. I just wanted people to hear what they were saying.
You never get an opportunity to hear a person with autism tell a story and you never hear that in the news because everything appears in very short sound bites. My goal was not to be manipulative in the method of filmmaking and let their portrayals be as honest as possible.
Were you looking to change any preconceived ideas about autism?
I think mostly my goal for the goal is for people to leave with a broader understanding of autism. Stereotypes are really misleading, especially stereotypes that the media presents. Autism is a much bigger thing than a nonverbal child or a savant. That’s what the media presents because they’re dramatic. I definitely want the audience to expand their notion of what should be considered functional. We all come into contact with quirky individuals that we may immediately discount and say they’re this or they’re that. You can’t be so flippant about it. Maybe the film will make you think about the individuals around you and make you have a little more compassion for their experience.
FILM MONTHLY - 7/25/11
Neurotypical Review By Daniel Engelke
It seemed like the world was against me seeing Neurotypical. It had been a blistering hot day only to be followed by an equally heated evening. As I was walking to the outdoor screening, rain started to come down in torrents. I headed to the high school where the film was showing in case of rain. Despite my dripping wet clothes and hard wooden chair, I was taken away by Neurotypical within the first five minutes.
Neurotypical is a documentary about autism from the perspective of autistics. The title comes from the term autistics use to describe people without autism. The film centers on three characters in pivotal times of their lives: Three-year old Violet, teenager Nicholas, and recently diagnosed mid-life Paula. Presenting the stories without pity or a Ripley’s oddity curiosity, Neurotypical’s simple presentation is its strongest attribute.
Outside of the three main characters, the film is sprinkled with other side characters. What works so well in these smaller interviews is their wide appeal. All autistic, the stories told in these interviews range from absolutely hysterical to emotionally moving and introspective. In one of the best segments of the film, an autistic F.B.I. employee questions why he would want to be neurotypical.
“I like who I am. I like the way I see the world. I don’t come up to you on the street and ask you to change your life because it isn’t the same as mine. I see nothing wrong with who I am.”
Usually, with first time directors, you see glimpses of greatness surrounded by mediocrity, but newcomer Adam Larsen transcends this pitfall. With well-crafted interviews and an eye for dramatic elements, Larsen has a knack for honest storytelling. The best example of this is present in Paula’s story.
Recently learning of her autism, the middle-aged woman attempts to reconstruct her life around it. Not everybody likes this change. Paula’s husband feels that she uses autism as an excuse for certain “unpleasing” types of behavior. Rather than carefully placed dramatic cuts during the couple’s arguments, Larsen leaves us with the ugly truth of autism as a cultural label.
As I got up from the screening, dried off but sore, I kept questioning if I was autistic or not. Neurotypical shatters any preconceived notions about autism and autistics. While it isn’t a completely perfect film, the lesser moments are easily overshadowed by its emotional power. It’s a documentary that doesn’t overstep its intelligence and makes a statement without a soapbox.
Daniel Engelke is a recent graduate of Columbia College Chicago’s Film & Video program. He resides in New York as a freelance writer and videographer. With expertise in French & British New Wave Cinema and Italian Neo-Realism, Daniel also works as a director and intern for Edward Bass Films.
ROOFTOP FILMS BLOG - 7/20/11
Meet the filmmaker: Adam Larsen by Cressida Greening
A few weeks ago we screened Adam Larsen’s delicately rendered, insightful documentary Neurotypical, a film which offers a different perspective on autism, placing autistics in control of readdressing society’s perception about them. In turn the film throws open the question of what we percieve as ‘normal’. We spoke to Adam about making the documentary and also had the chance to speak to Paula Durbin-Westby, one of the film’s subjects, about neurodiversity and the necessity of accepting a plurality of definitions and expectations of what constitutes ‘normal’.
Rooftop Films: Describe Neurotypical for someone who hasn’t seen it.
Adam Larsen: I’ve been describing Neurotypical as a documentary about autism from the perspective of autistics, but, really, it’s most accurate to describe it as a film about life, and the storytellers just happen to be autistic.
RF: Why did you want to make this documentary? What first drew you to this topic?
AL: My father has worked in the autism field for over 20 years. Growing up, we held social group gatherings once a month for autistic adults at our house. So I got to know autistics on very personal levels rather than viewing them through the lens of their diagnosis. I started to realize that there was a huge disconnect between the people I knew and the media’s generalizing portrayals of autistics. My dad and I wanted to make a film in which the autistics we knew could speak for themselves.
RF: You raise the topic of neurodiversity, which asserts that mental conditions are not actually disabilities but rather part of human development and should be recognized as normal. Do you see this attitude becoming more accepted in society as time goes on?
Paula Durbin-Westby: Developmental, mental, and physical disabilities are a natural part of the human condition. This is the meaning of the term “neurodiversity.” Neurodiversity is a fact of existence, whether we like it or not. The neurodiversity movement does not claim that these conditions are not disabilities. On the contrary, mental, developmental, and other neurobiological conditions typically are disabilities. The concept of neurodiversity encourages the idea of acceptance of people as they are rather than trying to “normalize” them. So, far from suggesting that these disabilities be recognized as “normal,” in the sense of “typical,” neurodiversity proponents urge people to consider that a range of human ability and disability exists, sometimes within the same person. While we should accept each human being as they are, this does not mean that we reject the idea of services and supports. We promote services and supports that will help each individual live life to its fullest, according to the principles of self-determination.
RF: What do you hope the audience gets out of this film?
AL: Well, if you’re certain that you are Neurotypical, be warned, you may walk away from the film feeling less sure about that. I think we all can benefit from thinking a little less typically.
RF: What’s your next project?
AL: I’ve got two documentary projects in the works. Starts With a Bow will follow John, a self-taught fiddler with Asperger’s and Tourette’s, on his quest to build a replica of an obscure 16th century violin. And, I’m also developing a film about Clarence Fountain, one of the founding members of the Blind Boys of Alabama.
DRIVE MOM CRAZY - 7/10/11
A Review: Neurotypical by Jason Ross
Neurotypical, directed by, Adam Larsen, was being shown in Brooklyn, New York on Friday night where I had the privilege of watching a film, which pieced together the mystery of human life, exploring Neurodiversity. The documentary tells the tales of a broad spectrum of people with different minds and differences exploring the vast details of an ordinary person’s life.
The movie deepens our thoughts about Neurodiversity incorporating our mood to listen and really understand every one. The documentary teaches us to help each other with support to be successful and live their life they way they are. Nothing in the world is more interesting than to see the differences every one has and can give to society. It is a reason why the documentary inspires every one to work together cooperatively.
However, the film stresses it does feel good to receive a diagnosis, but we are all still human needing connection and positive feelings about who we are. The movie teaches people, no one should feel the need for approval of their diagnosis because they have a syndrome. Furthermore teaching us, people with diagnoses always need to seek approval from society, but without a diagnosis, society does not have to approve who we are.
One Autistic man Adam Larsen interviewed said how Autistic people are vulnerable to being abused because they are not normal. However, the film also stresses, every one is vulnerable to fear and fear leads to much violence. It also teaches how every one needs to stay calm respecting any one and not being afraid of other people who are different than they are.
Another Autistic man describes the childhood game ‘Tag’. Tag may seem like a simple game for children to play, but it is also very telling when a child is left out not being tagged as ‘IT’. The director, Mr. Larsen deepens every one’s thoughts on loneliness and how to connect other people to just about any one knowing every one has something to give to someone else. When listening to the Q and A with Mr. Larsen, he told every one he also had a difference while growing up which inspired him to make a film like this.
Mr. Larsen broadened the movie as much as possible to show every one how much different people are, even on the Autism Spectrum, even though it is not just people on the Autism Spectrum you are watching on screen. When you view a person with differences as having a disease, you are narrowing your mind thinking people need to be so-called ‘normal’, but the film examines the reason why normal or Neurotypical is fiction. People need support. It is our human nature to feel supported by each other.
We need to teach each other to move forward. The documentary teaches how every one is given their own civil rights to live their life. Notwithstanding the war on gaining civil rights is not on individual people, but a service to protect every one’s rights to live their life however they choose to live productively. The movie, Neurotypical strengthened how I put it in my tee shirt, ‘we are who we ‘Aut’ to be’!
As one of the people interviewed in the documentary put it lightly ‘Reality is us, all of us’. Another thing, which inspired me while seeing the film, was the obsession to do the best we can and believe we can do it without the illusion that we can’t. The movie added, if a child is not a burden with differences like Autistic, people embrace that more, but this is just an illusion. We were identified with labels channeling through rationalities rather than emotions. Neurotypical intuitively tells us there once was a time we were in the age of defective and the age of genetics has brought us back to thinking about what is defective. Eugenics is not right as the documentary wants to explore opportunities people have to feel inspired to do something and/or support each other. It is an inspiring film and I hope the film branches out for all to watch, learn, and feel inspired to help every one to succeed.
The movie Neurotypical by Adam Larsen hopefully helps society change the conversation to support Neurodiversity. For more information about this film by director Adam Larsen, please visit Neuro-typical.com!!
posting more soon, OUT, J
2011 SPECIAL OLYMPICS, ATHENS - 6/23/11
The Thessaloniki International Film Festival will participate in the Special Olympics 2011 of Athens through July 3, hosting a tribute to the International Special Olympics, entitled "How I am - Challenging Perceptions".
A total of 21 documentaries will be screened during the Games, focusing on the needs and daily lives of those special athletes and their environment, but primarily focusing on their efforts and their relatives against the stigma and prejudice they sometimes face from society. Disorders like autism and Down's syndrome, people with mental disabilities, the difficulties in the rehabilitation of the disabled are the protagonists in the films participating in the tribute, four of which are Greek-language productions.
The Greek entries are "Christini, a Princess" (2007) by Iris Zahamanidi; "Performance" (2003) by Nikos Alevras; "What's Eating Dimitri?" (2006) by Valerie Kontakos -Yannis Missouridis and "The Trap" (2010) by Maria Danezi.
Some of the foreign participations are "Neurotypical" (2010) by Adam Larsen, which parallels the lives of three individuals who fall on the autism spectrum; "Her Name is Sabine" (2007) by Sandrine Bonnaire, a sensitive portrait of Sabine Bonnaire, the autistic sister of the French actress Sandrine Bonnaire, a film that won the Fipresci Award at the Cannes Festival in 2007 as well as "The Horse Boy" (2009) by Michel Orion Scott, based on the autobiographical book that follows the quest of Rupert Isaacson and his wife to find healing for their autistic son Rowan.
The tribute "How I am - Challenging perceptions" took place within the framework of the 13th Thessaloniki International Documentary Festival widely considered one of the world's leading festivals for documentary film attracting more than 22,000 visitors annually. (ANA-MPA)
THE GUARDIAN - 4/4/11
Autism on film: can cinema get it right? Variety critic Leslie Felperin responded to her son's diagnosis by watching every movie about autism she could find Rain Man ... cinema's most famous portrait of an autist – starring Dustin Hoffman, right, as savant Raymond Babbitt – is also one of its least accurate. Some parents go into understandable denial when confronted with the evidence that their child is on the autism spectrum, and some become consumed with a zealous need to seek a cure or ameliorate the symptoms with therapies. Given my profession, my way of dealing with our three-year-old son's diagnosis of an autistic spectrum condition (ASC) has been to try and understand the condition as best I could through reading books and watching movies about people with autism. So for the last two years, my husband Tom and I have been working our way – frequently in tears, sometimes laughing with recognition – through as many features and documentaries about people with the condition as we could source. It seems to me from where I'm sitting (on the sofa and in the cinemas) that there are far more, and many more varied, cinematic depictions of autism than there ever were before. No doubt this has something to do with the fact that, now, the condition is much more frequently diagnosed.
We started our home autism film festival, naturally enough, with Barry Levinson's Oscar-winner Rain Man. For many people – myself included – this was their first exposure to the notion of autism, and back in 1988 I was rather impressed with it. Now, having been a film critic for 20-odd years, and more importantly after learning so much about ASC, the film seems deeply flawed – both aesthetically (it's more mawkish and slow-moving than I remembered) and in terms of how it treats the condition, promulgating as it does the very misleading notion that people with autism are likely to be savants with incredible memory skills, when the vast majority of them aren't.
Even more irksome is the way the main function of the story's autistic character, played by Dustin Hoffman, is to serve as a vehicle for delivering redemption – and, due to aptitude at card counting, a big bag of blackjack money to Tom Cruise as his shallow, car-dealer brother. Several other films have deployed autistic characters in a similar way – as quasi-holy innocents whose narrative function is to inspire those around them to be better people. There's Nell (1994), for example, in which Jodie Foster's autistic backwoods woman helps Liam Neeson and Natasha Richardson, playing her doctors, fall in love. Snow Cake (2006), in which Sigourney Weaver's high-functioning autistic inspires Alan Rickman to get over grief for his dead son, is slightly less cringe-inducing than Nell, thanks largely to Weaver's more credible, tics-and-all portrait.
But something has seemed to shift seismically in the last five years or so, and people on the spectrum can now feature as proper protagonists, with the condition no longer their only defining characteristic. In the case of Bollywood megahit My Name Is Khan (2010), Shahrukh Kahn's title character's Muslim faith is just as important, and as much an engine for the film's baroque melodrama, as the fact that he has Asperger's syndrome, a form of high-functioning autism. Adam (2009) is a far from perfect romantic drama, but at least it shows Hugh Dancy's eponymous "aspie" hero trying to have a sexual relationship with a neurotypical woman (ie someone not on the spectrum) rather than just inspiring others to fall in love.
Of the recent crop of features about people on the spectrum, one of the strongest is biopic Temple Grandin, a made-for-HBO movie (it screened on Sky Atlantic on Sunday night) about arguably the world's most famous person with ASC. Based extensively on her own autobiographical writings, the film follows Grandin (played as an adult by Claire Danes) through her childhood and young adult years as she learns to use her own growing understanding of her condition as a means to gain insight into how animals think, ultimately becoming a veterinary scientist. Deeply cherished in our house for its scabrous honesty is Mary and Max (2009), an animated account of a penpal friendship between a young girl in Australia and a middle-aged man with Asperger's which doesn't stint on showing the alienation and loneliness experienced by people with the condition.
Some of the recent documentaries made about autism are even better, not just in terms of explaining and illustrating the nature of ASC but also as examples of excellent film-making. This year, the Thessaloniki documentary festival showcased some of the very best, alongside films about Down's syndrome and other conditions, and programmer Elena Christopoulou was kind enough to send me several DVDs from the showcase.
There are roughly two types of documentaries about autism: overviews, which tend to feature an ensemble cast whose degree of impairment spans the spectrum, and single-subject stories that follow one person or a family through a particular period.
Of the overviews, the two best I've ever seen are The Autism Puzzle, made in 2003 but still very relevant, and the last year's Neurotypical. The Autism Puzzle is freely available online and skillfully blends stories about people with ASC (including director Saskia Baron's own brother) into a history of the condition's discovery, and interviews with experts. Neurotypical concentrates more on giving a voice to people with the condition who see autism not as a disability but as a difference to be proud of. My favourite bit features a highly articulate man with ASC who recalls crying as a child at the end of Disney's The Jungle Book because he couldn't bear to see Mowgli join the human village, a world he felt he'd never been accepted into.
The single-subject stories deal with a similar range of people and an even more heterogeneous range of attitudes about autism. Some depict families intent on finding ways to "recover" their children from autism with alternative therapies (Beautiful Son, by Don and Julianne King, and to an extent The Horse Boy by Michel Orion Scott), and some focus on those deeply damaged by institutionalization (including actor Sandrine Bonnaire's harrowing account of her own sister's autism, Her Name is Sabine).
I was most moved by several lyrical studies that chose to celebrate without pity or despair how people with ASC see the world differently and find their own way to communicate with others, such as the haunting How I Am (Ingrid Demetz, Caroline Leitner), about a near-speechless teenage Italian boy whose sometimes-poetic subtitled writings punctuate the film. Equally uplifting and wry is 2010's Wretches and Jabberers (directed by Geraldine Wurzburg), a kind of road movie featuring two autistic men who also communicate through typing, travelling the world to meet other autism advocates and to change attitudes towards the link between disability and intelligence. Félix Fernández de Castro's wise, accepting and funny Maria and I opens up through a mixture of animation and live action a Spanish artist's affection for his profoundly autistic daughter.
Perhaps the most effective strictly as a film is Billy the Kid (2007, directed by Jennifer Venditti), a portrait of an awkward teenage boy living in suburban Maine who struggles to fit in, court a girl and overcome childhood traumas. It's eponymous subject was only diagnosed after the film was made, and somehow the very fact that the word autism isn't even mentioned once makes the piece all the more potent and universal. It stands as a reminder that people with the condition are first and foremost individuals – not just the labels applied to them.
I watched the two films back to back and now I wonder if they were scheduled in succession by design or by chance. Be that as it may, it worked: One film counterbalances the other and supplies a much needed “other” viewpoint.
The main theme of both films is autism, or it seems to be thus initially. A concept so battered and bruised, as many others which we have a hard time defining and understanding. The word started its life as a clinical term, then spent years in darkness as a word – taboo (or a curse word) and now gradually is becoming a patch of honor for parents whose children may be suffering of an array of things – or nothing. The main theme of the films is autism, but indirectly. The direct, living “here and now” of both documentaries are the people. Parents and children, “diagnosed” and not, “committed” or “free”, they all talk to the camera and tell us their version of what is happening to them – but also of what is happening to us.
Neurotypical, by Adam Larsen (www.neuro-typical.com) seems to present people closer to what we are used to in “normal” life. “Autistics” who make us wonder “what? He’s autistic?!” and “could I be too?” Larsen topples our preconceptions, avoids clinical labels, dances around the borders of normalcy and informs us that “tragically, as many as 149 out of every 150 people might be neurotypical”. It would be easy to stop there, content with the playfulness of the movie, happy with Violet’s sweetness, Nicholas’ almost “typical” teenage angst, Paula’s exciting new-found identity. We could leave the theatre full of certainties and fuzzy warm feelings. Larsen does not allow us to. Gently he hammers us right from the beginning. The words of Taylor’s mother haunt us throughout the film, along with Violet’s dad’s eerie music. The protagonists themselves lay out their difficulties and do not allow us our happy ending of “they lived happily ever after”. We remain grounded in reality – it is a documentary after all – and in the end “we have good days and we have bad days”.
The film affords us the rare opportunity to hear people describe what they are experiencing, in neurotypical terms. Wolf, Michael (who I hope will forgive me if I remember his name incorrectly), John, people of high intelligence, but even more importantly thinkers, philosophers, wordsmiths and autistics. Michael, with his misleadingly cheerful disposition describes for us how hard relationships are, without attacking us, without hurting us. John (hyper)analyzes the game of “tag” and teaches lessons about life – “our” life, not “autistic” life. Wolf, finally, without “biting our head off” slams us with hard questions. For us, Mowgli leaves the jungle for a better world. To him, the jungle is his home, a home more beautiful, functional and in the end a home that makes sense; wherein he makes sense. Finally, we are warned against “new eugenics”: If we “cure” autism, would we be diminished in genius, in creativity and ultimately – humanity?
Intermission, coffee, cigarettes, buy tickets for the next show – “should we stay or should we go? It’s 11 o’ clock”. The lights dim and Wolfram Seeger’s “Autisten” begins (www.exit-seeger.de).
This film seems to be the opposite of Larsen’s. Seeger’s people are “diagnosed” and live in a “home”, Haus Bucken (www.haus-bucken.de). Visually it seems to be an assault to the senses. Human beings in the bathroom, eating, getting dressed. Human beings in crisis, exhibiting odd behavior, not communicating. Human beings, finally, who have to wear a helmet and be strapped to a bed in order to avoid injury. Despite the beauty of the surrounding landscape, it was obvious from the faces of the audience what was going through our heads. Shock, inmates, incarcerated, hell on earth, sadness, pity, horror. Rituals of undoing: Keep it all away from us.
Seeger’s film is as bitter as Larsen’s is sweet। If we can see past the exterior, which means if we can break our own chains, chains of preconceptions, of puritanical pseudo-indignation, our own fear of dis-ease, a new world will unfold before our eyes. Granted, a hard world, a world that does give one answer to Larsen’s “eugenics or not”. A world that reminds us that for every “high functioning” autistic there exist ten (a hundred?), who do not function as well. Reminds us that we may not even be talking about the same phenomenon – let’s not forget that we “diagnose” people by a rough yardstick of what is manifest and not by causality. Reminds us how little we know about the human brain.
What is amazing in “Autisten” has nothing to do with any clinical reality. It is the people who are amazing and their constant challenge of what we take for granted. The people of Haus Bucken, even though they seem to be enclosed by its walls, trapped in a body that malfunctions, communicate freely! They perceive Seeger and the camera, hold a dialogue with both – not always verbally – and in the end tell their story through play, allegory, a sui generis symbolism and body language.
This is easiest to observe in Christian, a child both five and eighty years old, who loves Duplo and his mother’s head. It gets somewhat harder with Marlen, a girl who constantly plays with a pink flamingo and utters strange things like “does it bite? It doesn’t bite” and “it’s alive! It lives”. If we allow ourselves a small, arbitrary shift and look at the flamingo as a representation of Marlen herself, all the strange things suddenly make sense. She is there, shouting at the top of her voice “I live! I am here!” She tells us, that she’s not dangerous, she doesn’t bite even though sometimes she gets the urge to – who doesn’t? She exhibits amazing insight and frank intelligence when she movingly holds her flamingo and exclaims “she’s been hurt, her wing is injured”.
It gets harder. Lars hardly speaks at all. Without speech how do you approach someone? Well, it’s Lars who does the approaching – and the receding. He looks mischievously at the camera, he poses “menacingly” with his hatchet (which he uses to sculpt wood and not hurt people, but he just had to challenge our perception of the “crazy axe murderer”), he shows us snippets of his day to day life, his love of coffee – cappuccino please! – and in the end, when he’s said his piece, he covers his face with his shirt – “I’m done talking, I’ve given you all I care to”.
What about Hannes? Not only does he not speak, but he comes as close to the popularized image of the “autistic”, the “retarded” person as can be. He moans, rocks back and forth, has trouble eating, needs help in the bathroom. He certainly motivates the audience – “we are invading his privacy!” What we mean is that he is invading our peace of mind, the lens brings him way closer than we want him to be, it’s better to believe that such people do not exist. And then we see Hannes approaching and tilting his head, resting it on the music therapist’s shoulder, listening to him play a beautiful, perhaps slightly sad motif, circular, repetitive, safe and exciting. In the next scene Hannes is lying on his bed and seems to be moving his fingers and toes in a wavy manner, he seems to be moaning. No. He’s playing music and singing to us.
Finally we’ve reached the bottom though. It is impossible that Jörg understands anything, that he communicates. He sleeps tied to his bed, he hits, bites, screams. Do not show him! The image is harsh, desperate. If only we could see Jörg through a prism, through a filter, something to ameliorate the shock, just as we would do with a solar eclipse; use a piece of glass to shield our eyes, our souls. The filter is none other than the personnel of Haus Bucken and if you will, all people who work with the Jörgs of the world. In their eyes we do see disappointment sometimes, we see how hard it is to communicate, but we do not see despair, pity, resignation. They restrain his hands so Jörg can get a haircut, but for the most part they let him be. In his own way. When he bites his caretakers make it clear, that this specific way of communicating does not conform to our neurotypical world. We see Jörg reach out to strike, but he chooses not to – or he chooses to hit himself. His choice.
I am having trouble telling the films apart, remembering which character appears where and who says what. Perhaps it is the late hour, the torpor of the night. Or perhaps that is in itself significant. We are not all the same and individuality is tough. “It’s a handful, but not a burden”. We are parts of the same whole, we have the same needs and we all communicate. Autism challenges us to understand it, to understand an alien language, spoken by only one person, in symbols none of us have ever seen before. A world where it is we who are alien, strange, uncanny.
HOW I AM: CHALLENGING PERCEPTIONS - 2/14/11
13th THESSALONIKI DOCUMENTARY FESTIVAL - Images of the 21st Century March 11 – 20, 2010
On the occasion of the Special Olympics Athens 2011, the 13th Thessaloniki Documentary Festival presents a program dedicated to mental retardation and developmental disabilities curated by Elena Christopoulou. Thirty documentaries that deal with subjects such as autism spectrum disorders and the chromosomal disorders Down syndrome and Fragile X syndrome will be screened as part of the tribute. The Festival will also organize a panel discussion on topics arising from the films, with film directors and members of various related organizations as participants. The documentaries deal with a variety of issues that people with mental disabilities face, as well as those that affect the ones closest to them, such as their families, teachers and caretakers. Mental and physical health problems, societal acceptance, the inability to communicate and the struggle to fit in, educational methods, support systems, as well as the relationships with others, are at the heart of many of these films. It is imperative to note, however, that these documentaries do not solely focus on the problematic aspects of such conditions. On the contrary, they often discover and highlight how much affection, optimism, strength and humour often exist in these lives. Amongst the documentaries to participate are: Neurotypical, Adam Larsen, USA, 2010, 88’ – World Premiere
The –informal- term “neurotypical” was coined by the autistic community and refers to any “normal” person, i.e. one with regular neurological functions. Larsen’s debut film follows several individuals on the autism spectrum, such as a 3-year old who attempts to navigate the world, a teenager coming to terms with his identity and a recently diagnosed middle-aged mother who finds ways to cope with her new reality. At the heart of the film lie the relationships of its protagonists with the neurotypicals and the world; in an affectionate and refreshingly humorous manner, Neurotypical challenges the notion of what it means to be normal. Embraceable, Jon Kent, USA, 2011, 46’ – World Premiere
While most documentaries on the subject of mental disabilities focus on the subjects of autism and Down syndrome, Embraceable deals with Williams syndrome and follows several people affected by it, and their daily lives. Williams is a genetic disorder identifiable by a waiflike facial appearance, very low IQs and cardiovascular problems; it is also responsible for a cheerful demeanour, a passion and aptitude for music and a pure joy for life, which is much evident in this film. Today’s Man, Lizzie Gottlieb, USA, 2006, 56’ – European Premiere
Director Gottlieb’s brother Nicky was diagnosed with Asperger’s when he was 20 years old, having lived two decades without knowing what made him different. Gottlieb started shooting Today’s Man when Nicky became 21 and recorded his life for six years, wanting to place focus on adults with the condition, as the majority of the attention by the medical establishment and media focuses on young children with Asperger’s. The end result is an intelligent and informed film that provides awareness, as well as a touching and fascinating family story. For Once in My Life, Jim Bigham, Mark Moormann, USA, 2010, 90’
Equal parts entertaining and inspiring, For Once in My Life tells the story of an extraordinary group of musicians, The Spirit of Goodwill Band. The band, consisting of 28 members with mental and physical disabilities such as autism and cerebral palsy, started from a small a-cappella group and over the years received proper training, obtained instruments and now has keyboards, vocals and a brass section. The film follows the band while they prepare for a public performance, in the process revealing the transformative power of music and the significance of true community. In the Garden of Sounds, Nicola Bellucci, Switzerland, 2010, 85’
In the Garden of Sounds is the story of the Swiss musician and music therapist Wolfgang Fasser, who has been blind since his early 20s. Fasser records noises and sounds from the real world and mainly from his nature walks in Tuscany; these sounds, which he refers to as “postcards”, he imaginatively uses in his work with severely disabled children. Utilizing the rich and nuanced world of auditory stimuli and music, Fasser attempts to (and succeeds in) bringing his patients out from an often dark and lonely existence. Beautifully shot and with an exquisitely designed soundtrack, the film provides a glimpse into the infinite compassion of a man to help others. How I Am (Wie Ich Bin), Ingrid Demetz & Caroline Leitner, Italy, 2007
In How I Am, the directors allow Patrick, an autistic teenager, to show his life in his own unique manner and words, resulting in a lyrical film that immerses the viewer in the protagonist’s world. Patrick, who refers to himself as a “hermit on an island”, lives in a small Italian town and, because of his difficulties in communicating and establishing relationships, he is often lonely. His descriptions of his life, however, are infused with optimism and the hopes of a better future. The Horse Boy, Michel Orion Scott, USA, 2009, 94’
The Horse Boy is a film about an extraordinary journey undertaken by a couple in the hopes to cure their 5-year-old son, Rowan, of his autism. Travelling to the vast landscapes of Inner Mongolia, looking for shamanic healers and encouraged by the boy’s deep affection for horses -Mongolia’s most revered animal- the Isaacson family goes through tremendous hardships for an occasional glimpse of hope. The film, also focusing on the medical aspects and public misconceptions about autism, is, more than anything, a testament to the power of parental love and the lengths that it can stretch to. Living with Fragile X, Kathy Elder & Greg Mishey, USA, 2008, 64’
Fragile X syndrome is a genetic syndrome which results in a variety of physical, behavioural and intellectual limitations and disabilities, many similar to the characteristics of autism. The documentary takes a rare and close look at the lives of several people affected by the syndrome and their families: the difficulties and daily challenges, but also the bright moments, such as a medal win in a Special Olympics event. The filmmakers most of all aim to educate and inform about a condition that is not widely known to the general public.
VARIETY - 2/10/11
Thessaloniki focuses on disabilities Docu lineup linked to Special Olympics By Will Tizard
PRAGUE -- Thessaloniki's docufest unveiled a lineup Thursday featuring a strong showing of U.S. pics in its celebration of work keyed to the Athens Special Olympics later this year.
Tribute to work that explores disabilities, the lifestyles and the misunderstandings surrounding them, will include 30 pics such as the world preem of Adam Larsen's offbeat "Neurotypical," the word autistic people use to describe those without the syndrome, and "Embraceable," a look at the joyfulness of Williams syndrome sufferers.
Lizzie Gottlieb's "Today's Man" considers the often overlooked dimensions of adult life for people with Asperger's, while "For Once in My Life," helmed by Jim Bigham and Mark Moormann, is an engaging look at The Spirit of Goodwill Band, consisting of 28 members with mental and physical disabilities who show off the transformative power of music.
Michel Orion Scott's "The Horse Boy" follows a journey through Inner Mongolia by a couple hoping to cure their 5-year-old son of autism, while "Living with Fragile X," by Kathy Elder and Greg Mishey, chronicles lives touched by a little-known genetic syndrome that in many ways emulates autism.
Fest launches March 11-20 with a docu workshop led by the European Documentary Network intended to foster emerging filmmaker voices from the region.