Toni Fitzgerald

Autism-friendly Broadway Shows Bring Theater to a new Audience

During his long career in theater, Steven Chaikelson has served as general manager of Broadway productions ranging from “Death of a Salesman” to “Ring of Fire.” Yet, until recently, he had never taken his youngest children, twins Jamie and Daniel, to a Broadway show.

The 10-year-olds, who are on the autism spectrum, had been to several other plays with their father, including children’s productions. But as much as Chaikelson wanted to share his passion for the theater with his kids, he knew that seeing a Broadway show was unlikely. “It was challenging,” he says of bringing the twins to other theaters. “Jamie would tend to vocalize during a performance, so he might start talking to himself; he might start singing a completely different song.” Daniel enjoyed the theater when he was very young, but, as he got older, the experience became more difficult for him. “He’d walk in and start to freak out a little bit when it started. There was just so much hitting him from so many different directions,” Chaikelson says.

For many children with autism, attending a live theater performance of any type, let alone a Broadway show, is out of the question. The lights, the sounds and the large number of people in the theater can be troubling for kids on the spectrum. But the Theatre Development Fund (TDF), a nonprofit in New York City, launched a program in 2011 that is making Broadway shows accessible through a series of autism-friendly performances.

TDF’s mission is to provide support for works with artistic merit and to expose a diverse audience to the theater. The group has previously put on special performances for audiences with disabilities. In 2008, it began working on an idea to present an autism-friendly performance.

“We had done very successful outreach to students with hearing and vision loss through public schools, and the special-education teachers said, ‘What can you do for students on the autistic spectrum?” says Lisa Carling, TDF’s director of accessibility programs. “Right now, there are so many kids who are being diagnosed.”

But, unlike planning a performance for hearing- or vision-impaired audiences, an autism-friendly performance isn’t a one-size-fits-all endeavor. “We were dealing with a wide range of behavior on the spectrum,” Carling says. TDF reached out to Chaikelson and several other Broadway managers and producers whose children have autism to gather input on how to tweak a production for an audience of kids on the spectrum and their families. The group also consulted with Jamie D. Bleiweiss, Ph.D., an assistant professor at Hunter College who is also the co-founder and director of Autism Friendly Spaces, Inc., a nonprofit that helps organizations make their spaces and services accommodating to those with disabilities.

“We worked with the production teams, recommending minor adjustments to the audio levels and lighting to address some of the sensory sensitivities that individuals with ASD [autism spectrum disorder] commonly experience,” Bleiweiss says. “It was of the utmost importance to us that the integrity of every show was maintained to ensure that the audiences had an authentic experience and were not provided with a watered-down version of the shows.”

For example, in “The Lion King,” the first autism-friendly show that TDF sponsored, a strobe light usually shines during Mufasa’s death scene. The autism-friendly show substituted a dim light for the strobe. The consultants also recommended no noises louder than 90 decibels. House lights don’t go all the way down during the shows, either.

For each performance, TDF partners with a play. It buys all the seats for the production and sells them at a discount to families of children on the spectrum. TDF also consults with the play’s producers, cast and crew on needed changes. So far, there have been five TDF-sponsored autism-friendly performances of Broadway shows, including two each of “Mary Poppins” and “The Lion King,” both Disney productions, as well as “Spider-Man: Turn Off the Dark” last year.

“One of the things we talked about was really educating the cast and the theater staff at whichever performance we were presenting, so that the actors would know what they’re in for [and that] the house staff, especially the ushers, would know how to work with this community, many of whom were coming for the first time,” Chaikelson says.

Every performance has a calming corner where children can go if they start to feel anxious or overwhelmed. “[The families] get to experience the magic of theater in a welcoming and accepting environment where they don’t have to worry about someone telling their child to be quiet or being asked to leave because their child is too disruptive,” says Bleiweiss.

More than two dozen volunteers are on hand during each show to help with any needs that arise, and TDF offers coloring books and other activities for kids in the quiet area. Children are encouraged to bring comfort foods. They also receive a booklet before the show that introduces the characters in the play and gives them an outline of what to expect during the play. The booklet includes pictures of the ticket takers and suggests that, if children get nervous, they might hold a family member’s hand or play with a favorite “fidget,” such as a Koosh ball.

Carling says that about one-half to three-quarters of the families who attend are from New York City, and others come from farther away. She remembers one woman who drove all the way from Tennessee with her teenage son, who is on the spectrum, to see “Spider-Man.” “Her son couldn’t [tolerate airplane travel]. She didn’t have a ticket; they showed up the day of the performance. Luckily, we had some emergency seats and were able to accommodate them,” Carling says. “It’s that kind of interest and passion to do whatever it takes to get to see an autism-friendly performance.”

Though TDF was among the first to offer the autism-friendly live theater performances, they’re starting to pop up elsewhere. Houston, Pittsburgh, San Diego and London have had or are planning such shows, and TDF has consulted with many local theater groups about how to stage autism-friendly programs, as well as what to expect during them. “This is the most honest audience we’ll ever get,” Carling says. “There are sounds and movements in the auditorium that have nothing to do with the kids’ being bored and everything to do with their excitement and responding.”

For Chaikelson, it’s been a way to share his passion for theater in a way he wasn’t sure would ever be possible with his family, which also includes eldest son, Kevin, and wife, Amanda Rosen. But it’s also nice to connect with other families who have a child on the spectrum. “For kids, it is that experience of going to the theater,” he says. “For parents, it’s a little more emotional. You’re able to take the kids to experience this, and you’re able to go as a family—go out and experience this together without the constant fear. It’s people dealing with the same issues you’re dealing with, and it takes the pressure off in a huge way. You can go and relax a bit and enjoy the show on its own terms.”

For more, visit tdf.org.

Eimile Hart, a mother of four from Norman, Okla., remembers the day she decided her family was going gluten and casein free.

She began emptying her cupboards, filling huge trash bags with flours, breads and cookies. Her mother-in-law, who happened to be visiting, thought Hart had lost her mind. “She was sitting there watching me like I was a crazy person,” Hart laughs.

But Hart had a reason behind her rampage. She’d just finished the book “Unraveling the Mystery of Autism and Pervasive Developmental Disorder,” a memoir by Karyn Seroussi, who claimed to have cured her son’s autism in part by removing casein and gluten from his diet. Hart, whose twin boys were diagnosed with autism spectrum disorder (ASD) at age 2, was inspired. In came the trash bags, and out went anything containing gluten or casein.

Six years later, the Hart family remains on the diet, and many of the twins’ symptoms have faded. When they started the diet, the twins were nonverbal. Now they make eye contact, listen well and talk like any other kids. The Harts believe eliminating gluten and casein was key to those changes.

They’re one of a number of families who have tried dietary intervention in an attempt to treat autism, a development disorder whose symptoms range from difficulty communicating to sensory processing issues to gastrointestinal disorders.

“There is a long history of parents reporting that dietary changes have really helped their children. While this falls under the category of ‘anecdotal,’ it is very widespread,” says Lisa Lewis, PhD, who co-founded the Autism Network for Dietary Intervention with Seroussi. Still, scientific studies suggest dietary intervention is no magic pill. A 2010 study by the University of Rochester (N.Y.) concluded that removing gluten and casein from the diets of children with autism did not impact their behavior, sleep or bowel patterns.

So how do you decide if dietary intervention is right for your child? And even more so, what exactly is a gluten- and casein-free diet?

Gluten is a protein composite found in wheat, rye and barley. It’s the substance that gives bread dough its elasticity and baked goods their chewiness. Casein is a protein found in dairy products. Both can cause inflammation in the intestine.

Gluten is present in a wide range of products, including most flour, bread and cookies, prompting Hart’s purging frenzy. It’s also found in pizza crusts, bagels, cereal, pasta, beer, soy sauce and many imitation meats. Casein is present in everything from yogurt to pudding to cheese. Eliminating them from a diet can be difficult under the best of circumstances. And for picky eaters, which most kids with autism are, it can be even harder.

“At first it was extremely hard. All they wanted was milk, bread, chicken nuggets and mac and cheese. We were desperate to find something they would eat,” Hart says. “We spent every day for two weeks going to the store and reading labels.” Most families find emphasizing fresh foods, such as fruits, vegetables and meats, is the easiest way to make the switch. “You can still eat a lot of good foods,” says Angie Even, whose son, Dylan, has been on a gluten- and casein-free diet for four years. “Honestly, my 6-year-old [who is not gluten-free] prefers the gluten-free pretzels.”

In fact, going gluten- and casein-free often improves the nutritional value of a child’s diet, says Vicki Kobliner, MSRD, who advises parents and children on nutritional issues. “Most American children eat a lousy diet, and that is not what we’re striving for, not what we’re trying to replicate,” she says. “What takes the place of dairy and gluten is beans, nuts, fruits and vegetables. That’s far more nutritious than the Goldfish crackers or mac and cheese it’s replacing.”

Some children with autism see marked improvement, particularly with the gastrointestinal disorders commonly associated with autism—chronic constipation, chronic diarrhea and gastroesophageal reflux disease—with dietary intervention. Kelly M. Barnhill, certified clinical nutritionist and director of clinical care at the Johnson Center for Child Health & Development, a nonprofit in Austin, Texas, says the reasons for those changes are likely a combination of factors. Some children may have celiac disease but have never been tested because gastrointestinal problems are a common symptom of autism. She also notes many children with autism have never had normal bowel patterns, and simply removing casein can help firm them up.

MacKenzie Palumbo, whose 4-year-old sons Cash and Hollis have ASD, tried the diet after speaking with pediatricians and specialists. Though the Fall River, Mass., resident says she was told that there wasn’t enough scientific evidence to support dietary changes, she wanted to help her kids without adding to the more than 40 hours of therapy they already receive weekly. Her children have been on the diet a couple months, and she already has seen changes.

“One of my sons [Hollis] has been struggling with sleep for over three years. He’d be up five or six nights a week for hours. We’ve had him scoped to see if anything was wrong, had sleep studies done, you name it,” Palumbo says. “Three days after being on the diet, he started sleeping through the night.”

Still, Barnhill cautions there are no studies that have examined dietary intervention and autism and come up with consistent results. “I think the best research hasn’t been done yet,” she says.

Indeed, dietary intervention doesn’t work for everyone. “Honestly, it has not been the results I would have loved to have,” says Even, who lives in Burleson, Texas. Though her son sleeps better than he did before going on the diet, Dylan remains nonverbal and has not experienced the sort of drastic improvements noted by the Palumbos or Harts. Even says they continue the gluten- and casein-free diet because Dylan seems less hyper. But she’s open to returning to a gluten-containing diet when he gets older.

Barnhill notes that there is currently an extensive study on autism and dietary intervention taking place at Massachusetts General Hospital, led by director of the Center for Celiac Research & Treatment Dr. Alessio Fasano. Barnhill hopes that the study will provide a better understanding of how and why going gluten-free could help children with autism. At the least, Lewis would like to see doctors become more open to recommending dietary intervention. “Most doctors still do nothing more than treat symptoms, often with very powerful and potentially dangerous drugs that were developed for disorders other than autism,” she says. “Why they won’t recommend diet is mystifying.” 

Autism, also referred to as autism spectrum disorders or ASD, is a brain development disorder. Those on the spectrum have difficulty with social interactions and communication. They may avoid making eye contact, experience delays in speaking or making hand gestures, and communicate in ways that fail to convey their feelings. They often engage in repetitive behavior, such as opening and shutting doors or hand-flapping. They may also demonstrate intense preoccupations or obsessions. In older children and adults, this can manifest as a strong interest in numbers, dates, patterns or science.

According to Autism Speaks, an advocacy organization, 1 in 88 American children are on the spectrum, about 10 times the number who were diagnosed just 40 years ago. The reason for the increase is unclear; it could be that diagnoses have simply gotten better in that time, or, some argue, it could be environmental factors are upping the number of cases. Autism is more prevalent in boys than girls.

The cause of autism is still not entirely understood, though Autism Speaks says most cases “appear to be caused by a combination of autism risk genes and environmental factors influencing early brain development.”

There may be a correlation between a gluten-free, casein-free diet and improvements in behavior and physiological symptoms of children with autism, according to a recent study. Researchers at Penn State University asked 387 parents or primary caregivers of children on the spectrum some 90 questions about their children’s dietary habits, food allergies, food sensitivities and gastrointestinal issues. They also surveyed them about the children’s adherence to a gluten-free, casein-free diet.

Christine Pennesi, a medical student at Penn State College of Medicine, and Laura Cousino Klein, associate professor of biobehavioral health and human development and family studies, found that parents of kids with ASD reported a higher proportion of GI and allergy issues than the general population. They noted that parents whose children were on a gluten-free, casein-free diet reported more improvements in kids’ behaviors and symptoms than those who were not on such a diet. Improvements included language production, eye contact, engagement, attention span, requesting behavior and social responsiveness.

“There are strong connections between the immune system and the brain, which are mediated through multiple physiological symptoms,” said Klein in a statement. “A majority of the pain receptors in the body are located in the gut, so by adhering to a gluten-free, casein-free diet, you’re reducing inflammation and discomfort that may alter brain processing, making the body more receptive to ASD therapies.”

The study appeared in the journal Nutritional Neuroscience last year.