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Autism: The Musical

In “Autism: The Musical,” an extra-curricular program for autistic kids provides the framing device to gather different families and look into their lives.

Autism has gotten a lot of press lately, sometimes in the form of Asperger’s Syndrome, other times in the continued and controversial debate over causes and cures (science has found no conclusive evidence in the slow march to the resolution of those issues, which hasn’t stopped celebrities and hucksters from getting involved with get cured quick schemes that point fingers at outside causes). The saturation, however, has not necessarily resulted in a greater understanding of the condition, nor of its effects on a family — and the presentation too often drifts to the extremes, either the Asperger’s kid who will make a great engineer or the entirely dysfunctional savant who has one area of expertise but little in the way of communication or survivals skills.

In other words, perceived intelligence is often presented as a silver lining, as if selling these kids as gifted in this way somehow supersedes the hard parts. By the same token, there is a prevalence of shock stories that some recent documentaries have put forth, portraying autistic situations as entirely hopeless. “Autism: The Musical” succeeds by providing a realistic middle ground in which the lives of these families unfold in terms dictated by their own realities, rather than the preconceptions of a filmmaker going into them.

At the center of the film is Elaine Hall, an acting coach whose adopted son, Neal, was diagnosed as autistic. With minimal verbal communication skills, Hall found that Neal blossomed when exposed to fellow theater people who could enter into Neal’s world as a way of bringing him into ours. Hall translated that knowledge into her own theater program for autistic kids, called the Miracle Project — a daunting task for anyone familiar with autistic children. It’s an invitation to chaos, a mandate to walk a line between structure and no structure, to deal with the numerous sensory issues and social dysfunctions of every child in the room as they bounce off each other and somehow form all that into the semblance of a cohesive presentation that will make the kid feel great rather than commandeered.

First and foremost, the film is a vehicle to get to know the kids, including Henry, with his sophisticated phraseology and loud fascination with dinosaurs; Lexi, a bundle of awkward sweetness, with her sing-song voice that works like a signpost to the world that she is different but also the vessel of a remarkable singing voice that masks any difference; Wyatt, whose humor and perspective can sometimes mask the realities of his capabilities; and Adam, a pistol of a pipsqueak whose focus on cello is his most desired method of communication.

As the viewer gets to know each kid as an individual, there is also plenty of time spent on the family and, most specifically, how each unit turns into a wheel that spokes out from that autistic child through necessity. The picture as revealed through the wider scope is not a happy one. While the musical program is rewarding and the individual victories of the children are undeniably marvelous, there is no ignoring the destruction forged from such caretaking — the film is scattered with depression, marital problems, legal issues, medical frustrations, education woes, and the numbing exhaustion inherent in raising an autistic child. These are the hidden terrors that couples grapple with continually behind the scenes, away from the eyes of friends and family — piled up on top of one another every day — but they are revealed with an honest clarity here.

If there is one possible problem with the film, it is that all the families portrayed seem to be upper middle class and above (though the DVD extras do rectify this a bit) and you have to wonder how families with fewer resources function. However, by the end of the film, that problem ceases to exist, as one of the primary lessons of the documentary is that no one is immune to the personal perils involved in raising an autistic child. Money really doesn’t solve anything and the rich despair as much as anyone else — it can only get worse as you move down the income scale.

That said, this is not a depressing film, but rather an enlightening one. It’s sad a lot, but it’s happy sometimes. It’s honest and helpful in its portrayal of the lives of families with autistic children, but the children themselves manage to add light — as does the fact that, despite all the problems, there are parents this devoted to their kids. It’s also a call to action for ordinary people that societal changes are required. So often, autism is presented as a condition where people “think differently” — and that may indeed be the case. But with as many as one in every 150 children now possibly on the spectrum, everyone else is going to have to start thinking differently as well. Years of cultural notions are required to go right out the window in order to transition these kids into society. “Autism: The Musical” presents the challenges and possibilities for victory, as well as defeat.

Posted 7 months, 2 weeks ago at 11:06 pm by John.

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Lizzie Gottlieb “Today’s Man” interview

When Lizzie Gottlieb decided to make a documentary about her brother, she hoped that it would lead to some understanding of his life for her family and herself. Since the release of her film “Today’s Man,” it has opened up a world of people who share his disabilities and have helped open up a world of possibilities.

Gottlieb’s brother, Nicky, was revealed to have Asperger’s Syndrome sometime after she began her project. The disorder, which is on a more functional area of the Autism spectrum, is characterized by varying degrees of social dysfunction and intellectual fixation, as well as possibly extreme sensory issues and accompanying disorders, like depression, anxiety, obsessive compulsive and others.

Children with Asperger’s Syndrome are known for becoming fixated on certain subjects, but despite eventual expertise and often high IQs, usually require a very specialized education plan in order to optimize their strengths and not be overcome by their disabilities. Contrary to popular belief, there is no medication to cure or sate the disorder.

Gottlieb wanted to show the story of what happened to these kids when they were grown-up. Nicky’s parents — former New Yorker editor Robert Gottlieb and actress Maria Tucci— are attempting to figure out that fine line where their son is part of the world, but not thrown to the wolves — allowed to be himself, but not dependent on other people to caretake him while he dawdles through the day on the things that interest him.

Gottlieb is a theater director in New York City and founder and producer of Pure Orange Productions. “Today’s Man” will have its U.S. television premiere on PBS’ “Independent Lens” on January 8.

JM: It seemed obvious to your parents from his birth that Nicky was different.

LG: This is not typical of Asperger’s or Autism, but he had these seizures when he was nine months old that became very extreme. My mother noticed that there was something different about him from when he was born. I don’t think she would have pursued it in any way, but because he had these seizures, he went to many, many doctors. What they noticed with the seizures was that he had something called hypthorhythmia which was an EEG that had high, irregular brain rhythms and nobody knew what that meant. He was put on cortozone, which made his whole body bloat up and stopped the seizures. Because of that, they were on the lookout for things so early. And then he didn’t speak when typical kids begin to speak, so it was clear from pretty early that something was different.

But then he had these incredible abilities. He couldn’t speak and we were going to Italy to visit my mother’s family and all the doctors said to not expose him to another language because he doesn’t speak English yet, it would be very bad for him. We went to Italy and within two weeks, he spoke fluent Italian at three-years old. It was like he would learn English as if it were a foreign language, it was that part of his brain – it was like the way you learn your own language and the way you learn other languages are with different parts of your brain and he couldn’t learn English the way the rest of us do. After he spoke Italian, then he started to speak English, but in an odd way.

JM: As a child, how did you react to this new, needy brother?

LG: I was significantly older and I think that made a big, big difference. I had really wanted a younger sibling and my parents were really extraordinary, they always made it feel like the three of us had a problem to deal with and I never felt excluded, like the attention had shifted away and onto him. I think that was really incredible and really important.

I remember coming home from school and my mother was on the phone with a doctor and she was crying. My grandmother made me leave the room and my mother said, “No, bring her back in,” and she got off the phone and she was crying and she said “Nicky’s going to have a hard time learning.” I said “That’s okay, mom, I’ll teach him.”

I think that feeling came from my parents, from their way of handling it.

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Posted 1 year ago at 11:12 pm by John.

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