Fifty years after its founding, the Autism Society of South Carolina continues to improve the lives of South Carolinians
Across the state, local women are looking out for children with autism and their families. Strategically located in every community, these Parent Mentors have been hired by the Autism Society of South Carolina as part of the nonprofit organization’s Parent School Partnership Program.
Parent Mentors have children of their own who have been diagnosed with autism. They are experienced in advocating for their students to help them reach their full potential within the educational system as they navigate this lifelong, complex developmental disorder. The Autism Society connects families of autistic children with Parent Mentors in their area. Together, they work to build a collaborative relationship between parents and schools.
“These Parent Mentors have walked that walk, and a lot of them have children who are already in college, which gives hope to the parents who use our services,” says Outreach Coordinator Toni Smith, who leads the Parent Mentor Program. “Some of them get called late at night when parents are struggling, and our mentors help them feel understood and figure out how to move forward.”
Becoming a Parent Mentor is often a natural evolution of years of working closely with the Autism Society. One mother volunteered for their annual Strides for Autism Walk for many years before deciding she wanted to take on an official role as a Parent Mentor. Whether initiated by parents, schools, or the Society, the process begins with introductions and training. Parent Mentor Jill Powell, who provides support for Clarendon, Dillon, Florence, Georgetown, Horry, Marion, Marlboro, and Williamsburg counties, has developed parent training related to the next steps after an autism diagnosis, preparing for Individual Education Plan (IEP) meetings, and organizing documents related to the child’s development.
Parent Mentors help parents develop strong partnerships with school personnel, who then work together to guide students with autism toward increased independence and academic achievement. They also serve as a resource for schools on issues related to autism, make referrals to other agencies and groups, and facilitate parental involvement in the education process. They help ensure that families understand special education rights and responsibilities. Parent surveys tell the story best. Respondents report that they value Parent Mentors’ assistance in developing IEPs, sharing their experiences in transitioning from elementary school into adulthood, and their general knowledge and guidance about autism and other special needs.
Another major program offered by the Autism Society South Carolinas is Case Management. Serving the broader autism community, this program deploys case managers in the Upstate, the Midlands, the Pee Dee, and the Low Country areas to help connect individuals with autism and their families to a range of resources and services. Case Managers serve as independent advocates, assist with residential placement, and day services, address needs and problems, and help identify, and secure appropriate programming. They stay involved in clients’ lives to maintain care and monitor satisfaction.
At every level, the Autism Society partners with individuals and families to advocate for personal and systems-level changes. They work closely with families and partners to make widespread, lasting impacts. Approximately one in every 36 children is identified with autism spectrum disorder, according to 2020 data reported by the Centers for Disease Control and Prevention. This prevalence rate is up from one in 150 children in 2000 – a 10 to 17 percent annual increase.
All racial, ethnic, and income levels are affected, though minority communities already facing health disparities experienced a 30 percent increase between 2028 and 2020. Further, boys are nearly four times as likely as girls to be diagnosed. While the number of individuals with autism spectrum disorder is approximately seven million nationwide, the Autism Society estimates that more than 77,000 South Carolinians have the condition. Successful intervention and management of autism is largely dependent on early diagnosis, education, and access to services.
The South Carolina Department of Health and Environmental Control recommends parents utilize a developmental milestone tracking tool provided by the Centers for Disease Control and Prevention. As part of their larger Developmental Milestone Checklist Program, this tracking tool is available as an app and can help parents recognize signs of a developmental delay or disability and when/how to act. Once they have received an evaluation and diagnosis, parents can then connect with organizations like the Autism Society of South Carolina for support and resources.
“Autism is different for everyone, and there is not a one-size-fits-all approach to managing it,” says Autism Society Human Resources and Operations Manager Tanaka Long, whose goddaughter was diagnosed with autism in recent years. “Working for a nonprofit organization that assists individuals who have disabilities is a fulfilling endeavor that allows us to make a difference in the lives of many South Carolinians and their families.”
Established in the 1970s, the Autism Society of South Carolina was founded by a group of parents of children with autism who realized there was a lack of accurate and appropriate knowledge and resources surrounding the condition. Fifty years later, this grassroots initiative remains the only statewide advocate for autistic individuals and their families. Their programming and fundraising efforts aim to ensure that these residents achieve a quality of life comparable to their peers and neighbors.
Visit Autism Society of South Carolina for resources, volunteer, and donation opportunities.