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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.

Gottleb 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.

SB: 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.

SB: 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.

SB: It seems like Nicky is a paradox, as are so many children with Asperger’s Syndrome — debilitated in some ways and elevated in others.

LG: He had these extraordinary abilities, the languages, he had these incredible math abilities, and I think I felt really proud and really impressed, and I think because there was no diagnosis, on the one hand it was hard, because there was no feeling of community, no sense of him being part of something, but on the other hand, there was no limit to what he might achieve. He had these extraordinary, savant-like abilities and I felt that was the most special thing in the world. I had a magical brother and I could understand him in a way that nobody else could. As a kid, I felt like I got to be a parent of this extraordinary being.

It was harder when I grew up and he grew up. I think as he got older, he had been this extraordinary, limitless child and he became this very strange young man. He looks older than is and I think it’s harder now because he’s not a genius child with problems, he’s a man that people look at and think is strange and that’s hard.

SB: How has his life progressed since you stopped filming?

LG: Things have not changed dramatically since then. He tutors a couple people in Italian, he’s tutoring some high school kids in math, and he is taking some classes in order to teach English as a second language. There hasn’t been one kind of solution and there hasn’t been a particular job that takes up his time. That’s what my family really hoped for him, that he would find a place, an occupation that would be fulfilling to him in some way and give a structure to his life.

SB: Did he get much support from the Asperger’s group in the film?

LG: He refuses to ever go again. I had gone to those groups for awhile and kept wanting him to go and he wouldn’t go. I actually ran them for awhile and then I convinced him to go.

When there’s a Q and A after the film, he’s fond of saying that he only went there for my sake, for the film. When he’s there, it looks like he’s so happy to be there and so excited by it, but then he absolutely refused to go again. He wants to be around celebrities, he doesn’t want to be around people who have problems.

SB: You and your parents have a thin line to walk, taking care of him and watching out for him, but also giving him the freedom that anyone needs.

LG: He said “Why can’t I just be happy, isn’t that what it’s all about?” I think of that all the time, because it’s yes and no. It is what it’s all about, but also, it’s not, and and that’s a struggle for my family. Is it okay to just let him bumble around and let him do whatever he feels like doing at any moment and eat whatever he feels like eating? Or do we need to push him to have a more typical life? It’s hard to know if you let him do what he wants to do, is that giving up on him? Or is that accepting him for who he is? I don’t know.

SB: What was Nicky’s school experience?

LG: When he was very little, he went to a school for learning disabled kids. At this time, there was no diagnosis of Asperger’s, we didn’t even know it existed as a diagnosis, and the choices were either a school for learning disable kids — and he was clearly not learning disabled and it didn’t really seem right because he was incredible at most academic things — and there were schools for emotionally disabled kids, which was not where we wanted him. We wanted him to have models of typical behavior. My parents were at loose ends because there was nothing that seemed right for him. They applied to many schools and nothing worked out and finally my mother went to see a school called St. Luke’s in the West Village in New York. Nicky came. There was a woman there, a totally regular school for regular kids, a woman who had been teaching for decades, she met Nicky and came out of the classroom and said to the head of the school and my mother “This is the child I was put on this earth to teach” and she made it happen. He went to this school until 8th grade.

It was amazing for him, he had a teacher’s aide that was with him the whole time. It was great for him, but as he got older, the kids started being mean to him in a typical way. Then there was nothing after that, but they found since he speaks Italian, there’s a very small Italian high school that had only four kids in the class. They took Nicky, he went to high school there, but he did not like it. At that point in his life, he was watching “Beverly Hills 90210” and that’s what he thought a high school should be like, and so for the years he went to this school, he said that he didn’t know the names of the other three children. This was his rebellion, it was his protest, he hated it.

He came to a program in Florida for a few months after high school that was supposed to teach him independent living and that was a disaster. They were not what they claimed to be and he was found on the side of a highway in the middle of the night because he wanted Pop Tarts and he couldn’t drive and wanted to walk to the nearest grocery store. He came home and he’s been home ever since.

SB: Was there every any long-term educational plan for Nicky?

LG: There was not a very coherent plan except he was always very good with math and anything having to do with memorization and technical skills and he had a very hard time with history or reading comprehension, anything that involved a subtlety of meaning. My family has really taken it step-by-step, never saying let’s try to train him for this kind of profession, more let’s just take it one step at a time and see where he ends up. I think that has a lot to do with the fact that there wasn’t a diagnosis. When we first started making this film, we hadn’t heard of Asperger’s Syndrome and it wasn’t until after the first six months of making the film that I first heard of Asperger’s Syndrome and I went to that meeting that he went to in the end.

I think because of that, there was never a limit on what we thought he was capable of. It was always “Who knows, maybe he’ll be a talk show host?” There have been some stabs in the dark of “Maybe he could do this or maybe he could do this,” but never a consistent, concerted effort to work towards one thing.

SB: Arts are very much the focus of Nicky’s enthusiasm.

LG: He’s grown up around famous people and very talented people and he’s not too impressed with them unless they are on TV shows. His notion of glamor is not at all from my parents” life, it’s all from his TV shows and the kind of shows he likes are not the kind of shows that anyone else in our family would watch. He’s not very impressed by both of my parents’ friends.

My mother is friends with Sarah Jessica Parker and he always loved her, but he wasn’t impressed with her until she was on “Sex and the City.”

My mother has worked like 20 summers at the Williamstown Theatre Festival, so Nicky and I both grew up spending summers there. We were there a few years ago, we were having dinner with Sam Waterston and Nicky just said “I don’t really like your show. For example, what do you really know about your character’s love life?” Sam was like, “Um, not very much.” Not impressive to Nicky. His notions of glamour do not come at all from the world he grew up in, but from shows like “Melrose Place” and “Ally McBeal” and “90210.” Or anything with Heather Locklear.

SB: Nicky says things that make you laugh hard, you can’t help it, and it’s because he’s totally honest.

LG: I hope that people know that it’s okay to laugh at the movie. My brother is funny and he enjoys being funny. He’s a totally, thoroughly enjoyable person and I really wanted that to come across in the film.

There’s nothing malicious in him ever, he’s a truly kind person, he’s just sometimes inappropriate. I always find that people get that about him. We’re always afraid that he’s going to be horribly offensive, but as he goes through the world, I find that people do have an understanding of who he is and his intentions. He’s rarely horribly offended people.

In Williamstown, there was a big benefit for the theatre festival and Nicky said “Is that Senator Kennedy?” and somebody said “Yes.” Nicky, at this point, was obsessed with old women because my grandmother had died recently. My mother was on stage doing something and she left him in the charge of a family friend and Nicky cut loose, went up to him and said “Senator Kennedy, it is an honor to meet the man who is the brother of the man who shaped the future of our nation. Tell me about your mother. Does she exercise everyday?”

This entry was posted by John on Wednesday, January 2nd, 2008 at 8:48 am and is filed under Film & TV articles. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.