29/07/2013
John Crook
Channel Serf
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.
29/07/2013
Rick Ellis
Open Air
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.
29/07/2013
Kevin McDonough
Southcoast Today
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.
29/07/2013
Andrew O'Hehir
Salon
If you're close to someone with autism (as I am), the fascinating PBS film "Neurotypical" is a must-see
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.