The resources available to Louisiana children with autism plummet once they turn 18 and phase out of school systems, making it difficult for them to live fulfilling adult lives and leaving their families scrambling.
The so-called "falling off a services cliff" is one of many problems that families facing autism diagnoses experience in the Capital Area and in the state, according to a comprehensive new report from the Baton Rouge Area Foundation and Huey and Angelina Wilson Foundation. Another major problem is families being overwhelmed with information as they search for services after receiving an autism diagnosis.
BRAF is creating a website where families can go as soon as they receive autism spectrum disorder diagnoses. They can enter information about their child's symptoms on the website and receive a customized list of resources nearby that are best suited to them. The foundation also recommended creating a nonprofit organization to coordinate services for those with autism, making them easier for families to find and navigate.
Living with autism, Robbie Clark has struggled to tell his story.
The foundation's 260 page tome identifies ways that people increasingly diagnosed on the autism spectrum disorder can start intervention at their earliest stages and live more meaningful lives. It also pinpoints 25 ways how Baton Rouge can do a better job of taking care of those with autism, outlining strategies for health care leaders, school systems and the nonprofit sector to help fill in the gaps of autism resources.
"There's so much financially, emotionally that we're going through right now," said Erica Morgan, who spoke at the Tuesday morning unveiling of BRAF's report at the Manship Theatre. Morgan's four-year-old son, Cory, was diagnosed on the autism spectrum disorder this April, but has been showing signs since he was 18 months old.
"It's a scary feeling because we want him in the right program," she added.
Her son attends the Emerge Center, formerly the Baton Rouge Speech and Hearing Foundation, which helps to teach children communication, interaction and life skills. BRAF sees the Emerge Center as the tip of the iceberg for what the types of services they want to come to Baton Rouge.
Along with the website and the recommendation of a new nonprofit, the BRAF report calls for better ways to diagnose children on the autism spectrum disorder as early as possible. And it seeks more educational opportunities for children with autism, who the report says are limited by few resources available in public schools and little classroom space of special needs children in private schools.
"As an initial step, public school systems such as the East Baton Rouge Parish Public School System should hire a designated autism spectrum disorder specialist devoted to overseeing and implementing broad support for students with autism spectrum disorder," the report reads.
To take it a step further, BRAF says educational leaders should look into the feasibility of opening a Baton Rouge-based charter school for students with autism spectrum disorders.
BRAF is also recommending post-secondary education, housing opportunities, programs for independent living skills, better transportation, job training and placement programs for young adults with autism after they finish high school.
As BRAF has helped push for and create a Baton Rouge Health District to coordinate and improve health services in the region, the foundation wants the hospitals to recruit pediatric specialists who work with autism to the Capital Region. It also wants Our Lady of the Lake Children's Hospital and the Pennington Biomedical Research Center to help establish the area as a hub for autism research and care.
BRAF Executive Vice President John Spain said the foundation has been working on the autism study for three years. During the research, he said, they interviewed parents, caregivers, service providers, therapists, health care providers and more.
"One of the messages we heard loud and clear is after the early diagnoses, the family goes through an emotional roller coaster," Spain said.