“I have no clue, really. Is my voice weird? Do I sound annoying? Am I retarded? That’s how kids make me feel. I don’t like having Asperger’s. I don’t like being considered different” — Adam, age 12

Synopsis In THE BOY INSIDE, Vancouver filmmaker Marianne Kaplan turns the camera on her own family, with a candid and personal story about her 12 year-old son, Adam, during a turbulent year in the life of their family. Adam has Asperger syndrome (AS), a form of high-functioning autism characterized by socially and emotionally inappropriate behavior and an inability to interact successfully with others.

THE BOY INSIDE follows Adam from the first to last day of Grade 7, his final year of elementary school. Adolescence brings tough new challenges for Adam, as he struggles to navigate the complex youth culture of his classmates. School is a nightmare. Adam often says the wrong thing, or ends up in tears or in fights with other boys. As a result, he usually finds himself isolated, bullied, and excluded. He left his last school after another boy put a knife to his neck. Marianne and her husband, Peter, try to coach Adam on dealing with the bullying kids at school, and his teachers do their best to help him fit in. In an attempt to learn more about dealing with challenges of Asperger’s, Marianne and Adam attend an Asperger syndrome conference in Chicago, where they share experiences with other AS kids and their parents. Marianne meets renowned animal scientist and author Dr. Temple Grandin, herself autistic. But on their return, the conflicts at school continue unabated. These, and the all-consuming stress of Adam’s acting out at home, cause friction not only between Adam and his parents and sister, but also between the other family members themselves. At a loss for what to do next, his parents make the agonizing decision to send Adam away into foster care for a few days. As high school looms for Adam, his anxious parents are worried about the future. Will Adam be better at learning how to make, and keep, friends so he doesn’t feel so utterly isolated and alone? How will he handle issues like dating, drugs and peer pressure? Will he be able to survive as an independent adult when, in a very few years, he leaves the family nest? And will the family survive the grueling challenges of coping with a special needs child. THE BOY INSIDE is a rare, first-hand portrait of living with Asperger syndrome, and an intimate peek behind the curtain into a troubled year of a family in crisis.

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About Asperger Syndrome Twenty years ago, one in one thousand kids were diagnosed with autism and Asperger syndrome. Today, one in 160 children is affected. We are all likely to encounter individuals with autism or Asperger’s in our workplaces, classrooms, families and places of leisure. There is a great deal of misinformation about the disorder, and as such, there is a huge need for accurate and up-to-date information about this disorder. The Boy Inside will fill this need, providing current information and resources about Asperger syndrome, responding to the increased need for content and communication in an area that remains a mystery, but that experts agree is on the rise.

What is Asperger Syndrome?

• Asperger syndrome is an Autism Spectrum Disorder (ASD) and was first included in the Diagnostic and Statistical Manual (American Psychiatric Association) under the general category of Pervasive Developmental Disorders (PDDs) in 1994. In Vienna, pediatrician Hans Asperger wrote about this cluster of characteristics as early as 1944.

• Although research on the prevalence rate for Asperger syndrome is ongoing, it is thought that as many as 60 individuals per 10,000 have some form of an Autism Spectrum Disorder. Based on current population statistics for the United States (September, 2006), this prevalence rate translates to more than a million and a half people in the U.S. living with an Autism Spectrum Disorder.

• Asperger syndrome traits may make it difficult for children to function well in school and for adults to find and keep employment.

• Many individuals with Asperger syndrome exhibit extensive knowledge of a specific interest and therefore are capable of major accomplishments.

• Although Asperger syndrome can be first detected in childhood, many individuals are not diagnosed until well into adolescence or adulthood.

• The cause of Asperger syndrome is not yet established, but a leading theory at this time points to genetic causes. Many individuals diagnosed with Asperger syndrome identify similar traits in their family members.

• Treatments for people with Asperger syndrome may include counseling, psycho-education, social skills training, medication, family intervention, occupational therapy, speech-language pathology, special diets, and others.

• Without diagnosis, support and intervention, children, adults and their families struggle to understand their puzzling profile of strengths and deficits.

Common Traits of Individuals with Asperger Syndrome

SOCIAL / COMMUNICATION TRAITS

• Despite a desire for friends, may have difficulty in initiating or maintaining close relationships

• May experience problems reading non-verbal or social cues or understanding/using social rules

• May be very socially naïve and, as a result, often taken advantage of, rejected, or bullied

• May seek or demand to direct social contact (e.g. play is “on their terms” or not at all)

• May make poor (or intense) eye contact, or may demonstrate atypical use of gestures and flat or inappropriate facial expressions

• May have one-sided conversations, and show little ability for “small talk”

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SOCIAL / COMMUNICATION TRAITS

• May appear overly, and inappropriately, shy or overly extroverted

• May be unaware of others’ thoughts, feelings or perceptions, resulting in inadvertently appearing rude or inconsiderate

• May make overly literal interpretations of communications from others

• May avoid social contact or events, and experience heightened anxiety in social situations

• May learn and use language in "chunks" (e.g., phrases, dialogue from TV shows, etc.)

• May use communication only for delivering infor-mation or requesting, not as a way of interacting socially

BEHAVIORAL TRAITS

• May respond poorly to changes, sensory stimuli, transitions, lack of structure, and restrictions

• May exhibit repetitive movements (e.g., jumping, rocking, pacing) and speech (i.e., talking about favorite topics, interest)

• May exhibit rigid, inflexible and rule-bound behavior

• May exhibit inappropriate behavior given the social situation (e.g., speaking too loud in place of worship)

• May have exaggerated emotional responses to situations (e.g., tantrums when asked to something that they don’t want to do)

• May have superior ability to focus on favorite activities or areas of interest (e.g., spend hours mastering a video game to the exclusion of other pastimes)

COGNITIVE TRAITS

• Likely to have average to superior intelligence

• May have a detail-oriented approach to tasks, which may result in missing the “bigger picture”

• May have associated learning disabilities (e.g., non-verbal learning disabilities)

• Often have high verbal scores in a cognitive assessment, and low performance scores

• May exhibit difficulty seeing “parts-to-whole” and “whole-to-parts” relationships

• May prefer technical/factual information over abstract information

ASSOCIATED CHALLENGES

• May experience anxiety and depression

• May have attention difficulties (e.g., shifting attention; attending to unimportant stimuli)

• May exhibit tics or Tourette syndrome

• May have gross and fine motor deficits

• May demonstrate poor organizational skills (e.g., time management and planning, partial completion of tasks)

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Q & A with Filmmaker Marianne Kaplan

Q: Why did you decide to make The Boy Inside, which deals with your son, your family and yourself, instead of making a film on some other subject? MK: As a documentary filmmaker I have always felt some discomfort at sticking a camera in a subject’s face and submitting them to the kind of intrusion that goes with making a film. After producing a number of research-heavy films on a range of subjects outside myself, like Songololo: Voices of Change and Deconstructing Supper, I thought it would be interesting as an artist to turn the camera on myself and make a film about my life. My life is pretty much consumed with raising my 13 year-old son Adam, who has Asperger syndrome, a form of high-functioning autism, so I decided to make a film about that. In the beginning, my idea was to give Adam a camera so that he could keep a video diary and to have our two stories run concurrently. But we didn’t get very far into the process when it became clear that Adam, because of his age, didn’t have the attention span and focus to keep a video diary. So the film changed, but the idea of giving Adam a voice was a strong motivation right through the filmmaking process.

Q: When was The Boy Inside filmed? MK: The Boy Inside is a process documentary shot over the course of Adam’s final year of elementary school. Our first day of shooting was the first day of Grade 7, and our last day of shooting was the final day of Grade 7, a nine month period. And it turned out that it was a hellish year, which, in a way, was good for the film, but terrible for our family. Q: What challenges were involved in making a personal documentary about your own family? MK: In this kind of film there is always the conflict between how much to reveal and how much to keep private. As a family we have always been very open about Adam’s disability but, still, I was always grappling with the tension between making something that was revelatory and respecting our family’s privacy. There were also the practical details of making arrangements to shoot at the school, prepping Adam, and then, when the crew was all ready to go, having him decide that he didn’t feel like being filmed that day. And then there was the post-production period, when I was logging or editing material about the difficulties my son was having at school, and simultaneously getting calls on my cell phone from the school about Adam’s latest crisis of the day. It was a bizarre and surreal situation my editor and I were constantly shaking our heads about. Every time my cell phone rang we both froze, because it was invariably the school, or Adam in tears. I could never figure out whether it was life imitating art or art imitating life. Q: In The Boy Inside you deal with the whole issue of bullying, but a lot of Adam’s problems we see in the film seem to do with his being excluded or shunned, as opposed to the more traditional definition of bullying as ‘in your face’ aggression, or ganging up on him. Do you consider the act of exclusion as a kind of bullying, or is it something different, though no less hurtful for Adam? MK: I most definitely think that exclusion is a form of bullying. In fact, at all of the elementary schools that my children attended, bullying was discussed in class time with the students and student were taught that exclusion from the group is one of the behaviors that constitute bullying along with the other more obvious forms like physical and verbal abuse, spreading rumours, name calling, making fun of, etc.

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Q: Do you regret in any way opening your own life to the public in The Boy Inside? MK: It’s too soon to say because, at this point, The Boy Inside has not been seen by anyone outside my crew. I have to admit that I am very nervous about how it will be received because it is such an intimate look inside our family dynamic. Even though deep down I have a strong feeling that what I made has integrity and value, I am still very anxious about it’s impact and how it will be received. More so than any other film I have made because it’s my family and me up there on the screen.

Q: Did you confront issues of self-censorship in this kind of film, because it was your own family’s personal feelings, including your own as a wife and a mother, you were filming? MK: That was and still is an ongoing issue for me. I am very aware that I am not just choosing to put myself out there, but also my husband and my kids. My husband chose not to see the film before it was completed. But Adam saw it and was okay with it and so did my daughter, although they both commented that it was terribly depressing and that things weren’t as bad as the film depicts. I had to remind them that for me it was that bad.

Q: What's happened to Adam and your family since you wrapped filming of The Boy Inside? MK: Adam got accepted into the Vancouver high school of his choice. We had a lot of reasons why we chose that particular high school: a small student population; a curriculum focusing on information technology and computer-based learning; a diverse socio-economic and cultural demographic that we figured would be more accepting of differences. Anyway, our thinking turned out to be correct. The school is a very good fit for him, and whilst it is not perfect, he has settled in quite nicely and has a small group of at-school friends. Other changes for Adam are that his obsession with baseball turned into an obsession with World Wrestling Entertainment and the TV series The Family Guy and there’s nothing I can do about it except watch with him, watch him and my husband wrestle, and participate in Family Guy skits. He can do all the characters and knows whole scripts by heart. Another huge thing is that these days I hardly ever get calls from school. But I hate saying that because it means I’ll probably get one in the next 10 minutes….. Q: What would you like people to learn or take away from seeing The Boy Inside? MK: I want people to get a real sense of what it’s like raising a special needs child, how incredibly challenging and demanding it is. I would like the parents of kids that bully to get their kids to smarten up and get empathic. I would like us, as parents, to go easier on ourselves — we all do the best we can. None of us parents are perfect: we mess up, we apologize to our kids, we move on. I would like school administrators and teachers to see this film and realize that they have to take bullying seriously, and in particular the kind of bullying, often subtle, that gets directed at special needs kids. And that they make a serious commitment to make our schools bully free. I’d like educators to realize that there has to be more education around interacting with people with differences. When you read the statistics on how more and more kids are being diagnosed with autism, Asperger’s, ADHD etc. and you consider that one day in the future your school-mates will be your co-workers, we need to recognize difference and teach tolerance. Anyway, as Temple Grandin says in the film: “If you got rid of all the genes that made autism and Asperger’s, we’d have a very boring world. It’s like a little bit of abnormality is needed.”

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Q: In fact, your story seems to have two threads. One is that school administrators and teachers, students and parents need to educate and be educated to be more tolerant of AS kids and, in a larger sense, any and all differences. And the flip side of that is that, like the parent of any child, you want to train your own children to survive and flourish when they leave the family nest. In the film that latter issue seemed to be a big concern for you and your husband Peter. Do you feel more confident about Adam’s future as an adult now than you did at the beginning of the filmmaking?

MK: Peter and I still disagree on that one. I’m optimistic and he’s pessimistic. You do your best to prepare your kids, but even with the most socialized, well-adjusted kid, you have NO IDEA how things will turn out. To believe otherwise is to delude oneself. We continue to do everything we can to help him and he continues to resist our help. Dealing with adolescent kids is often rough going for parents but, beyond that, being oppositional, rude and defiant is especially typical of many Asperger syndrome kids. Our behavioral consultant says she has NEVER met an AS kid quite as oppositional, rude and defiant as Adam. But as Adam recently reminded me, after another huge fight: “Think how far I’ve come, mom, since I was first diagnosed.” And he’s right. But, as I told him, there is still a long way for all of us to go, so I continue to be cautiously optimistic about his future.

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