July 23, 2017

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Almost Adult, With Autism

Teens like Sarah Strate, 19, will soon age out  of state-funded ASD programs. Photo courtesy of Peter Gerhardt and Barb Strate.

Teens like Sarah Strate, 19, will soon age out
of state-funded ASD programs.
Photo courtesy of Peter Gerhardt and Barb Strate.

After providing sensory storytimes for young children with autism for Salt Lake County (UT) Library Services, Carrie Rogers-Whitehead noticed that when these children got older, there was a lack of programming for them. But there also weren’t many models for how to serve teens and young adults with Autism Spectrum Disorder (ASD).

“I found that there was a gap in services and people wanted services for the older group,” says Rogers-Whitehead, who became senior librarian for teen services three years ago and created “Schoolage Sensory Fun,” a program that focuses on teamwork and transition, and involves a sensory craft or activity.

She estimates that five to 20 people each month attend the program, but enticing potential participants can be tricky. To appeal to adolescents on the spectrum, Rogers-Whitehead went on discussion boards and attended networking events. Integrating herself into the tight-knit ASD community helped to draw 350 people to a Medieval Sensory Fair during the library’s ASD Awareness Month in April. The event featured jousters, mermaids, and craft activities.

”You won’t find high-functioning teens with ASD coming to ASD events because they don’t like to be labeled and are working hard on mainstreaming,” she says. “It can be successful and there is a need, but you can’t expect them to come to you”

A spectrum of functionality

Libraries, however, play an important role in supporting teens with ASD as they move out of school-based services, says Peter Gerhardt, who has worked with teens and young adults with ASD for the past 35 years and is the executive director of the EPIC School in Paramus, NJ, which serves children with autism. He calls “community-based transition planning” the greatest need among this population.

“Employment is one part of transition planning,” he says, “and the second thing we need to do is really invest time and energy in the idea of community inclusion—whether it’s a volunteer group, a bowling league, whatever it is—to promote active inclusion.”

These community-based opportunities are also important, he adds, because programs in schools have largely remained stagnant, focusing more on younger children than adolescents.

“Our understanding hasn’t progressed much since 35 years ago, and that’s the real problem,” he says. “Most professionals get into the field to work with little kids because kids are cute, fun, and show significant skill gains in short periods of time. Adolescents are big, and not always cute, and they’re working on long tasks.”

Gerhardt helps people like Sarah Strate, 19, of Palisades Park, NJ, who has moderate autism. Barbara Strate, Sarah’s mother, has seen Sarah improve. “She’s learning to text me when she arrives at a location,” Strate says. “She can dress herself and cook simple meals—things that the school has been working on for many, many years.”

Sarah is close to aging out of her state-funded programs, the same ones that have worked to teach her how to use cash and a debit card and how to order a meal for herself. “I know there’s 21 months left, and I’m very aware of it,” Strate says. “I’d love for the school she’s in to start an adult program, but it might not be possible.”

Still, some librarians often say that few members of this population come to the library. Why? Because there’s a lack of awareness of who is actually on the spectrum, says Dan Weiss, cocreator of the customer service website Libraries and Autism: We’re Connected.

“Unlike little kids with a parent or caregiver in tow guiding them or self-identifying, you have this population of young adults and adults that spans a spectrum of functionality,” Weiss says. Beyond that, the library might not be seen as a comfortable place for this specific population, either because it’s unfamiliar or because they had a negative interaction there in the past.

1511_Autism-PQ-rv

Transitioning to work

Autism affects one in every 68 births, according to the Centers for Disease Control and Prevention. Spectrum Success, a California-based vocational program open to high-functioning young adults with autism, reports that adult services for the autistic population can cost up to $196 billion per year—more than two thirds of the $230 billion spent in the United States each year on autism services. Even with those services, 35 percent of people on the autism spectrum between 19 and 23 years old have not had a job or received education beyond high school.

“What led me to look into these types of services is that parents have a common worry of ‘What’s going to happen to my kid when I’m gone?’” says Sneha Kohli Mathur, CEO and cofounder of Spectrum Success. “Typically, individuals on the lower end of the spectrum get more services throughout their lives because the funding goes toward them.”

Mathur’s service helps older adolescents transition from school to the workforce by conducting a behavior evaluation and then creating a personal program to address behaviors and provide training for a job that interests the client. Libraries can partner with vocational programs by inviting individuals with ASD to work—either for pay or as a volunteer. That’s what Renee Grassi did at the Glencoe (IL) Public Library when she supervised a high school student on the autism spectrum who worked as a volunteer.

“Libraries can offer teens with autism the opportunity to volunteer because libraries are orderly places with predictability and rules, and it works well with a population of very literal thinkers,” says Grassi, who is now youth department director at the Glen Ellyn (IL) Public Library. She accommodated the student’s individual needs by communicating in concrete, literal, direct terms. When direct sentences didn’t work, visual cues like drawings helped him understand instructions.

Now the director of the youth department at the Glen Ellyn (IL) Library, Grassi continues to connect with the autistic community. She works with special education professionals in the local school district to provide adolescents with skills they need to interact with people and become more self-sufficient.

“I focused on practicing social skills because they may not be as adept at social cues and honing those skills,” she says. Another program Grassi ran focused on manners, such as asking politely for assistance, making eye contact, and saying “please” or “thank you.”

“We read books and did activities where students practiced and I provided real-life examples with students and staffers,” she says. “It’s something that’ll help them later on in life too as they become independent people outside of the system.”

Resources

1511_Autism-ResourceCvs

Programming for Children and Teens with Autism Spectrum Disorder by Barbara Klipper (ALA Editions, 2014)

Library Services for Youth with Autism Spectrum Disorders by Lesley S. J. Farmer (ALA Editions, 2013)

Online:

Libraries and Autism: We’re Connected

Autism Welcome Here grant

Targeting Autism: Helping Libraries Support the Autism Spectrum Disorders Community

Serving Teens on the Autism Spectrum: An online course from YALSA

A place for socialization and skill improvement

Another library program, the Next Chapter Book Club, began at Ohio State University and offers people on the autism spectrum the benefits of socialization and skill improvement. Pam Brooks, head of adult services and reference for the Scotch Plains (NJ) Public Library, started a Next Chapter Book Club in 2008, after contacting the school system and putting announcements in the paper.

In addition to leading two Next Chapter groups, Brooks is heading a statewide initiative to spread the program to at least five more New Jersey libraries. Some clubs are run by volunteers and others by library staff. Some receive library funding and others depend on donations, but the basic model involves a small group of teens or adults on the spectrum gathering weekly in a public spot such as a restaurant to read a book aloud together in a circle. Then, they take a break and talk. People with varying levels of ability are welcome, even those who don’t read and are nonverbal. Parents have told Brooks that their children’s reading skills improved while participating in the club.

“Librarians walk in with trepidation about finding time and resources, about recruiting and training and experience—the universal fears people have in the beginning,” she says. “But once they get the training and they just do it, they find that it becomes the high point of the week. I love it, I have to tell you.”

The first group in Scotch Plains started after a mother was looking for a book club that her teenage son, who is on the spectrum, would enjoy. He enjoyed it so much that he stayed with the group until he was in his 20s. “They’re enjoying books and each other’s company,” says Brooks. “They support each other.”

Libraries and Autism: We’re Connected, the site Weiss created with library consultant Meg Kolaya, aims to give library staff the skills to create more welcoming environments. The site, developed after the Scotch Plains Public Library and the Fanwood (NJ) Memorial Library received a Welcoming Spaces grant from their regional library cooperative, features a training video and links to resources.

To date, 3,000 copies of the video have been distributed, and Weiss and Kolaya have presented at conferences nationwide. Their program is also sponsoring a new Autism Welcome Here grant program, which will award $5,000 per year to a library or libraries implementing services to benefit people with autism. The deadline is December 1.

Other online resources for libraries include Targeting Autism, run by Suzanne Schriar, associate director of Library Automation and Technology for the Illinois State Library and the mother of a 21-year-old son with autism. The website, she says, is meant to start “a conversation” among mental health professionals, service professionals, and librarians on making libraries more welcoming to students and young adults with autism.

“There’s incredible awareness, but that doesn’t translate into knowledge,” she says. “It’s about connecting with your humanity,” Schriar says. “If you work in public service, you have a responsibility to work with people in a positive way.”

“It’s clear that all of these kids are growing up and they’re going to need services,” Weiss adds. “There’s a significant role that libraries can play, but it’s more difficult than sensory storytime.”

Okyle-Carly_Contrib_WebCarly Okyle is a writer at Entrepreneur.com.

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  1. Be sure to check out our free online course, Serving Library Users on the Autism Spectrum, available on WebJunction.