Back in 2004, The New York Times reported: "With rare exceptions, no disability claims more parental time and energy than autism because teaching an autistic child even simple tasks is labor intensive, and managing challenging behavior requires vigilance." An often-overlooked challenge is the sheer amount of red tape associated with obtaining and maintaining services. (Obviously, this problem affects independent adults on the spectrum as well as parents and other caregivers.)
“Trying to obtain services for a special-needs child is a never-ending process. ... Taking care of the children is much simpler than taking care of the paperwork,” says Burk, placing her hand on a stack of papers to keep it from teetering off the edge of the desk. “It’s very frustrating.”
The autism diagnosis alone can be overwhelming, says Holly Thornhill of Murfreesboro, Autism Speaks advocate and mother to Hunter, who has autism.
Knowing where to start can seem like an insurmountable task, she notes.
“The first thing you have to do is accept it. Being in denial will hinder a child. Swallow your pride and say, ‘We gotta deal with this,’” says Thornhill.
Thornhill suggests downloading the Autism Speaks 100 day kit. “It gives you peace of mind and tells you what step you need to take next,” Thornhill says. “You also need to get an IEP (Individual Education Plan) set up and you need to get involved with therapists to find whatever therapists your child is needing and get that therapy set up,” she adds.
The young mother started early. As a nursing student, she knew her son had developmental delays early on. So she contacted Tennessee Early Intervention Services (TEIS). “He was already getting therapy, although we didn’t have a diagnosis,” she says.
Denise White of Smyrna, also a nurse, pushed to get both her boys help early. Her 13-year-old son, Levi, and 9-year-old son, James, both have autism spectrum disorders. James struggles mainly with social issues while Levi is nonverbal. Both boys are on TennCare, the state’s Medicaid system, because they receive Supplemental Security Income. The boys receive medical and dental coverage and are also cover under their mother’s health insurance.
The only way White knew to apply for SSI at all is because the director of the special-needs daycare Levi attended suggested she do so.
“I showed proof of their disability back when they were 2. I had to show documentation from doctors, from their teachers and from other people who knew them, just about every single piece of paper I had on them,” says White, a single mother of three, including teenage Marian, who is not on the spectrum. “It was mainly to get them services they need, not just now, but when they are adults.”