By Chris Taylor
(Reuters) - When Linda Mercier's son Sam was around two years old, she knew something wasn't right.
Sam was becoming withdrawn, not speaking or playing with other kids, and focused on specific tasks like lining up his toys. Eventually the mystery was solved: He was diagnosed with an Autism Spectrum Disorder, or ASD.
That was the beginning of a very long road, one that has involved significant time, effort - and money, plenty of it. Hundreds of thousands of dollars so far, Mercier estimates, on tutors, therapists and lost wages.
The good news: Sam is now high-functioning, and in many respects a completely normal 13-year-old. The downside: The price tag to get to this point has been massive.
"Only a parent of a child with special needs can ever understand the struggles, and the financial commitment, of raising and recovering an autistic child," says Mercier, a business owner from Winnipeg, Canada. "It's an endless battle - and an expensive one."
Indeed: A new study in the medical journal JAMA Pediatrics has pegged the total lifetime cost of supporting an individual with an ASD at an astonishing $1.4 million in the United States. If there is also intellectual disability, the total rises even more, to $2.4 million.
Such costs typically include an ongoing mix of special education programs, medical care and lost wages. After all, many parents of autistic children reduce their work hours, or even quit their jobs altogether, to help their child full-time.
The study is the most recent to tabulate just how crushing these figures really are.
"I can believe it," says Mercier, when told of the million-dollar-plus price tag. "Easy."
Even the study's lead author admits to being taken aback by the final number.
"I was really surprised," said Dr. David Mandell, director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania. "The old estimates were from 8 or 9 years ago, and at first I was skeptical they needed updating."
New studies are providing more current cost estimates. "What we found was shocking," Mandell said. "This is a huge hit on families."
Journalist Ron Suskind knows about that financial hit first-hand. His son Owen, now 23, was diagnosed as being on the autism spectrum about 20 years ago, a journey Suskind has recounted in the book "Life, Animated."
Owen has made remarkable strides, thanks to what Suskind calls "affinity therapy," or tailoring treatment depending on the child's particular way of understanding the world.
In Owen's case, his preferred frame of reference is Disney movies. Using that template, Suskind and his wife got to work unlocking Owen's full potential. But it did not come cheaply.
The organization Autism Speaks estimates that it takes around $60,000 a year to support someone with an ASD, Suskind says, adding that treatment for Owen cost about $90,000 a year.
"When we first got the diagnosis, the doctor asked me what I did for a living, and I said 'newspaper reporter.' He said, 'I'm so sorry to hear that. You know, private equity is a nice way to go.'"
MOVING FOR SERVICES
The costs are so prohibitive that many affected families actually pick up and move to states that offer a superior array of therapeutic services. Suskind calls it a "Grapes of Wrath"-style migration, of families ultimately headed for locales like New York or Massachusetts. (To choose the right place for your family, check out Autism Speaks' state-by-state resource guide: here).
There is also a measure before Congress that aims to mitigate the financial burden for families: So-called ABLE accounts would be patterned after 529 college-savings plans, but specifically geared toward those with disabilities. The tax-advantaged savings could be put toward expenses like education, housing, therapy and rehab.
One piece of advice from Mandell: Don't automatically think that you have to drop out of the workforce in order to manage your child's case full-time.
It's the natural human instinct to want to do so, of course. No one knows your child and his or her needs like you do, and navigating multiple layers of city, state and federal services can indeed be a full-time job.
But when one parent drops out of the workforce, just as out-of-pocket expenses start to mount up, "it can become very financially difficult," Mandell says.
He urges families to take a long-term view of caregiving. "In some cases it might be better for the mother to stay in the workforce, and then hire additional support to provide case-management services," he says.
For Linda Mercier, the towering costs hit her family budget every single day. It meant cutting back wherever possible, taking second jobs and foregoing trips to visit family. All well worth it, of course, since Sam has been such an inspiring success story.
But there's no question that raising a child with an ASD is a sobering financial reality.
"I would tell other parents of special-needs children that there is hope," says Mercier. "It can get a lot better, and it does. But it takes a whole lot of money to get there."
(Follow us @ReutersMoney or here Editing by Beth Pinsker, Lauren Young and Dan Grebler)