TAP into Valuable Resources

The Autism Program offers a network of help for campus and community

By Stephanie HenryLinda Tortorelli (left) with Jacob and his mom, Becky Moore

“When you’re dealing with a disability like autism,” Becky Moore says, “you need a connectedness with the autism community to know how to reach out and get help.” The oldest of Moore’s three children was diagnosed with autism early in his childhood.

Since Moore’s family moved to Champaign a few years ago, that help has come through The Autism Program (TAP), housed in the Department of Human Development and Family Studies (HDFS) in ACES. Under the direction of Linda Tortorelli, TAP offers resources and referral services to parents and professionals. There is no charge for most of their services. 

TAP helps people navigate complex systems, knowing who to call and what to say. The support is a lifeline, Tortorelli says, especially when a child is first diagnosed with autism. 

“When someone is dealing with disability in their world, the systems they have to navigate are extremely complicated,” she says. “First is even getting to a diagnosis. Then, how do they get support and services in the medical community? Then, how to get those in the educational community?” 

TAP’s resource center is housed in Christopher Hall. The room is colorful; picture strips and visual resources hang on the walls. Shelves and tables are lined with books—for parents, educators, college students, and adults who deal with autism. Because it’s a drop-in center, student interns, Tortorelli, and other staff are on hand to talk with families and others who come by.

TAP also offers social skills classes, new diagnosis orientations, and trainings for childcare providers, first responders, and others. 

For Moore and her family, the connection with Tortorelli and TAP could not have been better timed. 

“This has been a dark time for us,” Moore says of new issues the family is facing with Jacob’s personality and behavior, aspects of his autism. “But the people at TAP are there with resources. If I didn’t have someone like Linda Tortorelli, I don’t know what we’d do.”

JACOB AND AUTISM

“It’s been said that if you’ve met one person with autism, you’ve met one person with autism,” Moore says. That’s because autism looks different in each person who has been diagnosed. 

Autism spectrum disorder, or ASD, refers to a collection of traits related to difficulty with social communication and repetitive behavior. These traits can be different for each person on the autism spectrum. It is not known what causes ASD.

Jacob, now 16, loves to bowl and to recite movie lines. In fact, he uses lines from movies, expressing both happiness and sadness, in real moments to relate to people. Since Jacob’s diagnosis nearly 10 years ago, Moore says, some stages of development have been easier than others. The current stage has been a tough one. 

Jacob is verbal and high-functioning, though he deals with a severe developmental delay. Cognitively, he is at a kindergarten or 1st-grade level. But at nearly 6 feet, he towers over his mom. Moore says Jacob’s meltdowns have become a problem. 

That’s something else Tortorelli has been able to help with.  

“He’s a big kid with an adult body, but he thinks like a little boy,” Moore says. “He knows he has autism, but he beats his own drum. He has a good sense of humor, but he’s more serious now. He feels bad after a meltdown. He says, ‘Poor mom, poor dad.’ Just like a little boy. That is the level he is at.” 

Staff at TAP have made picture strips, social stories, and picture books of what Jacob does during his days—riding the bus, interacting with horses, bowling—to help ease the stress involved with schedules or new activities. 

Even before connecting with TAP at U of I, Moore says the family received help from The Autism Program in Springfield, where they lived before moving to Champaign. 

“Our relationship with TAP has been strong through the years,” Moore says. “We know it’s there and when we need it, we call and use it. But families like us are not always in crisis.” 

SUPPORT FOR FAMILIES AFFECTED BY AUTISM

TAP, formed over 10 years ago at U of I, is part of a statewide network of autism programs. The founders, including Aaron Ebata, an HDFS professor, and James Halle, then a U of I special education professor, wanted to begin an autism program. In deciding how to shape the program, Tortorelli says, “We went to the people we had identified as stakeholders, and we’ve held true to what they wanted.” 

The stakeholders wanted five elements in the program: a place they could go, people to talk to (not just a website), education and training for themselves and the community, access to diagnostics, and classes or groups that could help with social skills. 

Tortorelli says her work with TAP was a career that found her. After years of looking for answers in the community herself as a mom to a child (now an adult) with autism, she has acquired a wealth of knowledge about who to call and where to go for support.

She adds, “I have been in the trenches navigating these complex systems for my own son, who has complex needs. Disability services and money are scarce.”

TAP also offers support to educators working with kids with autism and provides an internship program for students. Interns get experience working with families, help make visual supports, and complete an online curriculum.  

A research evidence base underlies the recommendations and referrals made at TAP. In autism, some interventions and strategies have a preponderance of evidence, others have an emerging evidence base, and some are unfounded, Tortorelli says. 

“If an approach has no research behind it or has proven to be harmful, we let parents know,” she says.

Tortorelli worries that the word does not get out far enough that TAP exists. 

Recently, the Illinois state budget crisis created fears that the program would have to close. With efforts from parents and advocates, TAP received gifts from Carle Foundation and Christie Foundation in Champaign-Urbana. Additional funds from private College of ACES donors and HDFS helped keep the program operating. Stopgap funding from the state will allow the program to stay open through June 30. Additional private contributions are vital to TAP's continuing to serve community needs. 

Mom Becky Moore says their family is eager to give back in return for all TAP has given them over the years. “We’re not just needy for help—our families can help, too. If I know someone is struggling or if there’s some support I can lend, I am happy to share it.” 

Learn more about TAP programs or providing financial support at theautismprogram.illinois.edu.