After parents first receive the news from a doctor or a teacher that their child is on the autistic spectrum, there is an inevitable period of grieving as they process the news. They must accept the fact that their child will face serious challenges and may miss out on the milestone events -- a home run on the Little League game, a driver's license, the prom -- that other parents proudly post on their Facebook page.
Most parents get over it. The child will have his own achievements and will reach different milestones, which are treasured as much as the traditional ones. Parental love and pride pushes aside the devastation.
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."
Dolmetch's experiences are not unique. A recent study looked at cost of autism on families. The research was conducted by David Mandell, associate director of the Center for Autism Research at the Children's Hospital of Philadelphia and associate director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania, in Philadelphia.
Mandell found that mothers of children with autism earned, on average, less than $21,000 a year. That was 56 percent less than mothers whose children had no health limitations and 35 percent less than mothers whose children had other health limitations.
All this work makes a real difference for the child. A study coming from Columbia found that kids who outgrew many of their autistic characteristics received early, intensive therapy, which was facilitated by parents with more education and financial wherewithal.
As the reported cases of autism have soared in recent years, so have the overall costs. Some estimate that autism costs society $137 billion per year. And nobody wants to pick up that big tab. Autism falls into a black hole between medical and educational services. Insurance companies expect schools to pay, and schools want the insurance companies to pay.
Parents who have the educational and financial resources can provide these therapies for their children. They pay for it themselves. They move to wealthier school districts. They hire lawyers. They spend hours on the phone with insurance companies. They network with other parents to learn about new doctors and compare services in other school districts. Parents who don't have those resources are unable to get the right help for their children.
What should be done? My co-blogger, Dr. Manhattan, will follow up with one proposal.