Driscoll knows therapy works. When her son Paul was just a little over a year old, he began throwing frequent tantrums. Sensitive to light and noise, he would hit himself in the face and bang his head on his crib. He would not speak. "This was my first child, so I wasn't sure what to expect," she says. More than eight years later, as his mother tells the story one Sunday afternoon at the dining room table in their suburban Northern Virginia home, Paul, now a chatty and personable boy, sits in the den watching a movie with the shades drawn and the lights turned off. When he began ABA therapy at age 3, he could barely speak, she recalls. Now, he's able to talk, have relationships with his siblings and other kids at school, and be included in a general classroom, she says, breaking into a smile. His need for intensive therapy has waned with each improvement. While the hours fluctuate, what was once upwards of 20 hours a week is now closer to 10. "I look at periods of time that are dark and ugly," she says, recalling the intense stress she first felt dealing with her son's condition. "It's that grieving period when you give your life up and your expectations for your child's life--that for me was a dark period."
Marine Corps Master Sgt. Buck Doyle and his wife, Kyla, like the Driscolls, have faced constant hurdles getting therapy for their 5-year-old daughter Kate. For months, their youngest daughter was on a wait list for therapy. After it began, the family then faced the bill--$100,000 in out-of-pocket expenses over a span of three years, forcing the family of four to move in with Kyla's parents. They had to sue Kate's school in order to get her into an appropriate class, which meant legal bills. All the while, Buck, assigned to reconnaissance, was deploying regularly to Iraq. Kate's doctor wanted her to have at least 25 hours of ABA therapy each week, but TRICARE paid for only six hours, leaving the family to come up with the rest. Kate's mother admits she consciously kept some of the struggles she was enduring to herself while her husband was in Iraq. She worried that if she had told him what they were going through while he was deployed, "he wouldn't have been able to focus on his job. And when you're getting shot at, you need to focus."
Buck's third deployment to Iraq was cut short when her worst nightmare came true. Her husband came home early after he had been shot by a sniper. Surviving and healing from a bullet wound would soon blend into the emerging stress the Doyles were facing in getting care for their daughter. Recently the family was given short notice that Buck would be getting orders to Camp Lejeune in North Carolina, where there are virtually no services for autistic children. When he refused the reassignment for that reason, he got pushback from within the service that could have led to his leaving the Marines after 20 years. Recently, though, he was offered a different posting that better suited the family. "This is a guy who would give his life for his country," Doyle says of her husband. "The one thing he won't do is give his kids' lives."
Paycheck to paycheck. Driscoll believes she has it easier than some families. Her husband brings home the salary of a colonel. They own a home that they've been able to milk of all its equity. "Obviously, that will affect our financial future," she says. Her family is adapting, living paycheck to paycheck. They haven't been on a vacation since Paul was born. She jokes that she's long overdue for a hair coloring. She knows the burden is greater for families of the enlisted--like the Doyles--or for those families with no credit to tap. Those families have little choice and are forced to forgo treatment for their children altogether. "It should not be so hard to fight for treatment. That's the reason I keep going," she says. The stories "bring on an emotional response for me personally. How can I help that family get to a better place?"
Congress has made incremental attempts to enhance benefits, but families say more needs to be done to ensure comprehensive treatment. In March, TRICARE launched a "demonstration project," broadening standards for whom it considers a qualified therapist to treat autism, a move meant to increase providers and expand access to treatment. In September, Congress voted to increase TRICARE's annual benefit coverage of ABA therapy by 20 percent to $36,000 per child. TRICARE still has to agree to pay, something some families say isn't happening even with a medical diagnosis. "To a parent with a child who can't speak, being told they won't pay for speech therapy--that's hard to swallow," says one mother.