Graduate student Maura Fogarty enjoys interactive play with a client at the Center for Autism Spectrum Disorders. Second photo: Graduate student Kennedy Goodman and a client at the center play with bubbles. Third photo: CDS graduate students Ashton Northrop, Riley Sanders and Grace Lafo speak at the First Presbyterian Church in Marion, Illinois, about autism awareness and acceptance. Bottom: CASD and SIU Athletics partner to sponsor a sensory-friendly SIU men’s basketball game. (Photos provided)
May 08, 2024
SIU’s Center for Autism Spectrum Disorders changes lives and communities
CARBONDALE, Ill. — Colleen, a Southern Illinois mother, knew something about her adorable son George was a little different by the time he was about 9 months old. Around his 1st birthday, George’s early interventionist suggested the boy might have autism. The possibility brought many fears and questions. George’s nurse practitioner suggested they check out Southern Illinois University Carbondale’s Center for Autism Spectrum Disorders, and Colleen said it has been a life-changing decision for the family.
“The benefits – the list is just too long,” Colleen said, noting that her son’s communication, and his life, has improved immensely in the year or so he’s been coming and the center has helped George, now 4, obtain a communication device as well.
“His emotions, his behavior, his levels of frustration are all better. He feels he’s understood,” she said. “There used to be sadness in his face, and now there is not because of all of these things. It’s also provided community for him – friends, and we’ve met other families here, too.”
The positive impact of CASD extends well beyond what it does on a daily basis for children like George and their families, said Denise Croft, the center’s director. Indeed, it is felt throughout the hometowns and the entire region. The center and its staff are active in community outreach and involvement in a wide variety of ways, including free virtual or live trainings at schools, churches or all sorts of other organizations on “what is autism”; appropriate and effective ways of supporting individuals and families with autism, and making athletic and other events more friendly to children on the spectrum.
“Whatever people need, we are available to help,” Croft said.
The services of CASD are not only extraordinarily successful, but they are also completely free. “Parents of kids with autism can spend as much as $60,000 or more a year on therapy,” Croft said. Nevertheless, CASD families make a substantial commitment, according to Croft. Children come six hours per week to receive applied behavior analysis and speech therapy, and a family member must remain on the premises to observe when a child is at the center.
“Families sacrifice to give their children as much help and as many advantages as they can,” Croft said.
The center has received a grant from The Autism Program of Illinois (TAP) to serve the southernmost region of the state. Croft and Lesley Shawler, clinical supervisor/faculty consultant, also met last fall with Gov. JB Pritzker to discuss the needs of children with autism and their families and advocate for state assistance.
Students help the center succeed
Lacey, a Perry County mother, became aware of her son Landon’s autism at about 18 months, and his pediatrician referred the family to CASD just before he turned 2. In just over a year, she said, the difference has already been huge.
“It’s done so many wonders for Landon with his talking, his communication and socializing,” Lacey said. “He used to only cry.”
SIU students, under the guidance of the center’s staff, play vital roles in helping the children make these metamorphoses.
“During my time at CASD, I have seen the impact that we have on families, making the services we provide really worthwhile,” said Grace Lafo, a master’s degree student in communication disorders and sciences from North Port, Florida, who is also studying behavior analysis and therapy. “One example that sticks with me was helping a child find a successful mode of communication. At the center, we’ve been able to support his communication needs, and now he independently navigates his device to express his wants and needs.”
Through hard work and dedication, Kennedy Cloe, a behavior analysis and therapy master’s student from Sesser, Illinois, and a couple of peers were able to provide a nonverbal child with an iPad, which he now uses with speech-generating software.
“Now he can functionally and fluently communicate his wants and needs with his family and clinicians,” Cloe said. “His caregiver reports he’s now carrying and using it more at home, which is great to hear!”
Reaching out
Lafo has been involved in school and community trainings to support individuals with autism, including speaking when invited at the church of a CASD client’s family, helping church members understand autism and learn about autism acceptance.
In addition to working with children and families individually and in small groups, Cloe has also assisted with several community projects. Last October, she assisted with a StarNet training for educators throughout the state of Illinois, and in March, she helped with a paraprofessional training CASD conducted at Tri-County Special Education District.
“Both trainings helped raise awareness about autism, as well as how to effectively support individuals with autism, both inside and outside of the classroom,” Cloe said.
Other support
The center is “there” for families in a multitude of other ways, Croft and the parents say.
CASD representatives will join parents in individualized educational program (IEP) meetings at schools. Croft noted that the region’s rural geography and lack of centralized resources in many cases can make it difficult for parents to know what to do and where to go for help.
“We try to be a catalyst, educating them about their children and their rights and leading them to the information and resources they need to help and advocate for their kids,” she said.
Even everyday tasks may be a bit more complicated when autism is involved. For instance, Croft notes that drowning is the No. 1 cause of death in children with autism, so CASD links families to free swim lessons, offered to entire families at the Hub in Marion through the Autism Society of Southern Illinois.
CASD can even assist with things like recommending dentists who are autism-friendly.
“The CASD also provides support for us to participate in events we otherwise wouldn’t have, while also spreading awareness,” Colleen said, “We’ve been in the SIU homecoming parade, which helped spread awareness of the CASD. It was George’s first time being in a parade, and we attended the SIU basketball game, too.”
The sensory-friendly SIU basketball game that SIU Athletics and the CASD partnered to sponsor in January was a “very exciting” evening for all, Croft said. The center provided equipment, graduate assistants and staff so anyone with autism could take a break in a sensory-friendly room any time that evening. The children got to greet the Saluki basketball players before the game, but it was also all about raising awareness, too, as facts about autism were streamed on the big screen throughout the game. Plans call for repeating the game annually.
The center also sponsored a float in the SIU homecoming parade last fall, which gave some of the children their first opportunity to participate in such an event. Staff are working on plans for a sensory-friendly outing at a local gymnastics studio where the children and their families will feel accepted as well as a parents’ night out.
“Families often have trouble finding someone they can trust to care for children with autism so they can have respite or an evening out, so we hope to be able to offer something like that on occasion,” Croft said.
The center also hopes to support social skills groups for adolescents and/or adults in the near future.
Researching better ways
Croft said the center’s faculty, staff and students are constantly looking for ways to improve the lives of children with autism and their families, so research is frequent and ongoing. Some projects relate to behavior strategy, figuring out which techniques work best. The center is currently recruiting for a master’s study involving dietetics and nutrition and a sleep study is underway as well; children on the autism spectrum tend to be pickier eaters than their peers and are more likely to have poor sleep habits.
George is currently involved in a research study involving his speech-generating device, and Colleen said the results thus far have been “very positive.”
Landon has participated in a couple of research studies, including a sleep study, and is currently in one on motor stereotypies, and it’s “going well,” Lacey said. Motor stereotypies are rhythmic, repetitive, fixed, predictable movements such as arm waving, head nodding or rocking back and forth that are especially common in children on the autism spectrum.
Cloe is excited to be participating in several CASD research projects, including instructive feedback and matrix training, both of which involve teaching children ways to communicate. Her master’s thesis project also involves a verbal behavior project.
Lafo has been involved in both speech-language and behavior analysis clinical research. “From teaching early communication skills to examining the effects of language modeling to assessing client preference of communication methods, it has been extremely rewarding to find answers to some of the questions within both fields, all the while bringing the best care to our clients,” Lafo said.
Several other projects are also underway, including a community outreach teaching project that is a “fun, effective way” for individuals ages 10-21 to learn important activities of daily living using evidence-based teaching methods through video modeling, said Croft.
Significant impact
Cloe got involved with CASD as an undergraduate in 2021 while completing her practicum in behavior analysis and therapy and quickly fell in love with the center.
When it came time to apply for graduate school, SIU was her top choice among behavior analysis programs because of the center and the wonderful practicum experience it provided, Cloe said. When she completes her master’s degree, she plans to sit for her board exam and become a certified behavior analyst and ideally, continue to work at the center.
“Being here has made me realize how underserved the Southern Illinois region is, and how many children and families need services that the area does not have the capacity for,” she said. “Since I’m from the area, I would love to be a part of expanding services to more families and help connect them to the right supports.”
Lafo got involved with CASD as an SIU sophomore, observing sessions because she was interested in working with children who have autism. During her junior and senior years while completing her double-major bachelor’s degrees in communication disorders and sciences and linguistics with minors in American Sign Language and psychology, Lafo took a more hands-on approach, assisting with research and clinical services, and she’s continued to provide both speech language and behavior analysis services as a graduate student.
“I hope to work with children with autism because of meaningful experiences during my time at CASD,” she said.
To learn more about the center, visit the Center for Autism Spectrum Disorders website or email autism@siu.edu.