However, once the parent overcomes that grieving process, they have to endure a lifetime of smaller cuts. The therapy, which is so necessary for the child's success, is very expensive. Parents will fight insurance companies and school districts to cover the costs. Often, they are unsuccessful, and they must deplete family bank accounts. They face hostile school districts and community members who accuse the family of stealing their children's money. Families become drained both emotionally and financially.
Working on their children's behalf becomes a full-time job. One parent, often the mother, either stops working or works less hours, in order to manage the educational and therapy of the child. She must shuttle the child long distances to find the right services. She must navigate the health care bureaucracy. She must meet frequently with teachers and constantly negotiate with the school district to get the therapy that their children need.
In an article in USA Today, Ricardo Dolmetsch, an associate professor of neurobiology at Stanford University, says his son's autism diagnosis has changed both his personal and professional life.
This work was made more difficult, Dolmetsch says, by the fact that caring for a child with a disability is a full-time job. Although his wife, neurobiologist Asha Nigh, supports his research, such as through managing projects and writing grant proposals, she has put her own scientific career on hold in order to care for their son and his brother, age 7. In his opinion, Dolmetsch says, his wife has earned an honorary doctorate "in getting insurance coverage for stuff."
"The finances of autism are brutal," Dolmetsch says. "The amount of continuous care these kids need is a lot. ... The only thing that works at all are behavioral treatments," which, depending on the state and one's health plan, may not be covered by insurance, he says. "They're very intensive... and they're horrifyingly expensive."