Autism is on the rise, and it can affect any family. Here's what you need to know.

Illustration by Vivienne Flesher

Marco Robertiello arrived on schedule in October 2000, weighing in at five pounds, seven ounces. Apart from being a little underweight, he had a near-perfect Apgar score, and by the looks of things, the brown-haired, brown-eyed newborn was healthy.

In fact, everyone thought Marco was a perfect baby. He was quieter than most and didn’t need much attention. He was happy just lying in his crib, gazing at his mobile or spending time in his playpen staring at a book. “He was angelic,” remembers his mother, Adrienne. “Everyone would say, 'He’s so good.’ He hardly cried, and he never fussed.” When Marco missed several important developmental milestones like babbling, rolling over, and crawling, family and friends reminded his parents that boys were late bloomers. Even their pediatrician assured them everything was fine when, at six months, their son couldn’t sit up. But as Marco approached his first birthday, he still wasn’t responding to his name or looking over when others tried to engage him. “I had a gut feeling that something was terribly wrong with him,” says Robertiello. Her instinct proved right. Marco was soon diagnosed with autism, a complex brain disorder that impairs one’s ability to communicate and relate to others—and even though he began saying a few words, he eventually lost that ability. The medical community understands surprisingly little about autism, referred to as autism spectrum disorders (ASD), because its symptoms can range from severe to a high-functioning autism, known as Asperger’s syndrome. There’s general agreement that a genetic predisposition coupled with unknown environmental triggers may explain what’s behind it, “but there’s no single factor that’s been identified as the cause,” explains Stanley Greenspan, a child psychiatrist who developed the Floortime treatment for autism, which involves a special kind of play that follows the child’s leads and interests.

Photos by Brian Kirst, Courtesy of the Autism Society

No one knows the source of autism, why it impacts more boys than girls, or whether there’s a chromosome or cluster of genes associated with it—but it’s usually diagnosed by the time a child is three and sometimes as early as six months, says Autism Speaks. (The nonprofit organization was founded by Bob Wright, former chairman of NBC Universal, and his wife, Suzanne, the grandparents of a child with autism.) There’s also no fully effective treatment, no blood test or biochemical or neuroradiologic exam to detect it, and no known cure. It’s a fact that autism rates are rising and not just because of earlier detection and a broadening of its definition over the years. It was relatively rare in the ’80s, affecting one in 10,000 kids. Today it’s one in 150—with four times more boys than girls receiving the diagnosis. That makes it more common than pediatric cancer, diabetes, and AIDS combined. As this fast-growing disability continues to make front-page news—with the United Nations declaring a World Autism Awareness Day and celebrities like Jenny McCarthy, Toni Braxton, and Ed Asner continuing to champion awareness on behalf of their children with autism—why have libraries been slow to catch on? “Largely, we haven’t done a good job in teaching people about autism,” says Brenda Smith Myles, chief of programs for the grassroots organization Autism Society of America. “When librarians go to school, they don’t have courses that talk about children with special needs and how to modify programs for them.” The American Library Association (ALA) offers a few print and Web-based tools for supporting patrons with autism. And at its annual conference in Chicago last month, more than 100 school and public librarians attended a two-hour program on this subject sponsored by the American Association of School Librarians. During the session, co-moderator Alison Ernst, director of library and academic resources at the Northfield Mount Hermon School in Massachusetts, asked the audience whether they knew someone who had autism or knew someone who knew someone along the spectrum. “Every single hand went up,” she says. With such an obvious need for more information and no national campaign for librarians, a growing number of public libraries across the country are taking steps to alert their staff about how to address the needs of these children and their families. Bernadette Nowakowski, director of children’s and young adult services at the Chicago Public Library, recognizes that autism is an equal opportunity disorder that can affect any family regardless of race, ethnicity, or socioeconomic status. One of the clerks in her branch has autism, and although Nowakowski doesn’t have precise data, she suspects that at least one in 100 of her patrons probably does, too. That’s why she jumped at an invitation last March from the Autism Program of Illinois (TAP), a state-funded initiative that diagnoses, treats, and provides resources about the disorder, to train the children’s librarians at each of her system’s 79 branches. As part of that effort, TAP, along with input from local librarians, developed an online toolkit that includes printable schedule cards with pictures. Since kids with autism tend to be visual learners who like predictability, the cards depict step-by-step details of the most common things that take place during a library visit. The timing couldn’t have been better. Nowakowski had just learned that the Hope Institute Learning Academy, a new charter school west of Chicago, was opening this fall—and that 20 percent of its students are autistic. At the Washington Library Association conference in Spokane last April, Julie Ashmun, a special education consultant at the University of Washington, presented a session on “Autism Awareness in the Library” to help members identify a few red flags, such as no eye contact, a lack of communication and social skills (like not saying hello or thank you), hand flapping, rocking, pacing, moaning, quiet humming, and covering one’s ears, behaviors that aren’t harmful but may signal that the child needs assistance. These children may also have problems transitioning among activities and following very specific routines and display repetitive behavior like obsessively arranging objects. “But like the saying goes, 'When you’ve seen one person with autism… you’ve seen one person with autism,” says Ashmun. “There are many different symptoms, and each child can be affected differently.” With help from the Autism Society’s North Carolina chapter, a few librarians at the Public Library of Charlotte and Mecklenburg County recently unveiled training videos that include detailed information on how to present rhythm-and-rhyme storytimes for children on the spectrum. The videos, narrated by Emily Nanney, children’s services manager at South County Regional Library, and Tricia Bohanon Twarogowski, children’s services manager at the Matthews Branch, offer hands-on advice on how to carry out special needs programs and the importance of making all children’s programs inclusive. The videos also offer practical tips, such as making sure to reserve an extra 30 minutes after storytime so parents can socialize, because, oftentimes, busy schedules packed with doctor’s visits and therapy sessions can make it hard to do so with other caregivers like themselves. Frustrated by the lack of community services and activities for her son, Marco, Robertiello turned to her local library in New Jersey last year—and, surprisingly, hit the jackpot. Meg Kolaya, the director of the Scotch Plains Public Library, immediately gave the green light for monthly programs with speakers on autism. And when her library received a grant last year from the regional library cooperative INFOLINK, Kolaya teamed with Dan Weiss, director of the nearby Fanwood Public Library, to launch a comprehensive Web site and 20-minute customer service training video, under the guidance of Linda Meyer, executive director of Autism New Jersey, and Jill Harris, director of psychology and coordinator of New Jersey’s Autism Program at the Children’s Specialized Hospital. The video explains that loud interaction with other patrons, inappropriate sexual behavior, tantrums, or certain disruptive behavior such as banging on a keyboard or tearing out the pages of a book shouldn’t be ignored. If efforts to redirect the child fail, the video goes on to say, then the incident should be handled as any emergency situation—call security or 911. “Many librarians don’t know what autism is, how to deal with it, and how to recognize it,” says Weiss. “They may think they’re just problem kids.” Since its release last year, the award-winning “Libraries and Autism: We’re Connected” has turned into a professional development tool used by libraries across the county. It also offers free decals for libraries to place on their doors so that parents and caregivers know that their staff have received special training—and children with autism are welcome. An estimated 1.5 million Americans are diagnosed with autism, and while no one knows for sure how many of those are children, the Centers for Disease Control and Prevention says the number of six- to 17-year-olds classified as having autism in public special education programs has increased to 211,610 from 22,664 between 1994 and 2006. Although that figure doesn’t account for homeschooled kids and those in private schools, about 90 percent of children with autism in this country attend mainstream public schools, says the Autism Society’s Myles. Depending on the severity of their autism and the level of support needed, some are assigned to special ed classes, while others are educated with their typical peers. With those kinds of numbers, it’s surprising to learn that many media specialists, like Sarah Grzeskowiak, a librarian at the private, nonprofit Summit Educational Resources school for children with autism near Buffalo, NY, have never received any instructional guidelines. Other than the general information and sensitivity training given by her school, Grzeskowiak says she’s pretty much left to her own devices. “The most valuable training was learned through others’ examples, as well as trial and error,” she says. Even those like Patti Stein, who studied special education in college and has a very high-functioning son with Asperger’s syndrome, say they still struggle with basic daily problems like how to handle very loud students who are disruptive in the library. “I work closely with them to see if the behavior can be modified,” says Stein, a media specialist at Bohannon Middle School in San Lorenzo, CA. “If not, I work with the special education teacher to create a plan for library use… but I’m still working on how best to deal with it.” Autism expert Cecelia McCarton, founder of the New York City–based McCarton Center for Developmental Pediatrics, a diagnostic and treatment center for childhood developmental disorders, has some advice: she says visiting the library is a privilege and children with extreme behavioral issues shouldn’t be allowed in until they’re adequately prepared. Although there’s no one-size-fits-all approach to supporting children with autism, there are some strategies that can go a long way when it comes to giving these kids a positive library experience—and, one hopes, keep them coming back. For Stein, it was patience and persistence that paid off in her media center. Even though some of her students with autism are nonverbal, Stein strongly believes in greeting each child by name and saying something brief. She makes an extra effort to know their specific interests and pulls books for them on those subjects. She also memorizes their names, since some don’t know how to respond to a request for their library cards. “I had a lovely girl with autism who did not speak for the first year in the library,” Stein says. “The second year, she began to say hello. By her third year, she called me by name, created signs for the library in her own coded language, and had conversational exchanges.” Linda Martin, a media specialist at Sugar Hill Elementary, a Title I school with 700 students in Gainesville, GA, spends twice as much time with those who are along the spectrum—and they love the extra attention. She’s had success weaving in creative art therapy, soft music, and even square dancing when teaching her students with autism the regular curriculum. Another tip? Making friends with the special education teachers goes a long way. “They’re the experts and have more training than we do,” Martin says. Ohio special ed teacher Maggie Oliver, who has a 15-year-old son with autism who is high functioning, is one fabulous resource that her school and public library turn to when they need advice on books. She created a comprehensive reading list geared toward four- to eight-year-olds on the spectrum for the Akron-Summit County Public Library when its children’s librarian told families she had nothing specific to offer them. Oliver was invited by the library as a guest speaker this fall to talk about her list and how librarians can better handle behavioral issues. No one realizes the full emotional and financial impact of autism on families—but even here, librarians have a role to play, says Rose Brock, a media specialist and parent of a four-year-old girl with autism, who also has a hard time sifting through the wealth of print and online resources—many with opposing views. “The tricky part is trying to discern what’s reliable and what isn’t,” says the librarian at Coppell Middle School West in Texas. “There are definitely times that I still feel frustrated—there’s just a sense of being overwhelmed by it all.” That’s where knowledgeable librarians can really make a difference. They don’t have to be experts on autism to teach parents how to evaluate the information they find, she says. While the basic rule for treating autism is that earlier intervention is best, don’t expect miracles. Only 30 to 40 percent of students who attend the private McCarton school in New York have made enough progress to be considered high functioning, says McCarton. And while that’s everyone’s wish, the disorder typically lasts a lifetime, and progress is often gradual. “Our victories are small but meaningful around here,” says Grzeskowiak, the librarian at Summit Educational Resources. Keep in mind that although children with autism share certain symptoms that lead to a diagnosis, each child is different and requires a unique treatment, whether it’s Greenspan’s Floortime or the more widely used Applied Behavioral Analysis (ABA) approach, which uses rewards to reinforce desirable social, motor, verbal, and reasoning skills. The same rule applies in the library. “Generalizations don’t work—it’s their profile that counts,” says Greenspan. “Don’t assume that children with a diagnosis are going to be similar. It’s how they relate, communicate, and think that a librarian or the library staff need to know.” Most important, don’t forget that kids with autism are kids first. “And they should be recognized as having the same rights to being included in the community and receiving effective education as anyone else,” says Harris, director of psychology and coordinator of the autism program at New Jersey’s Children’s Specialized Hospital. “With some training, involvement with people with autism can be the most rewarding experience of your career.”