Having a child with autism adds a layer of costs for parents planning for their own retirement.
On average, a person older than 18 who has a disorder on the autism spectrum will face annual related costs that are greater than $50,000, even without a debilitating intellectual disability. Those with a more serious autistic disorder can incur annual costs of about $88,000 per year, according to a study by the American Medical Association.
Nobody knows that better than Mitch Tuchman, managing director at Rebalance IRA, a retirement investment firm, and father of Jack Tuchman, a 19-year-old with Pitt Hopkins Syndrome, an autism spectrum disorder that has left Jack with the mind and abilities of a 1-year-old.
"The big thing on our minds and the minds of other parents with a disabled child: When we are unable to physically take care of our child or when we are 6 feet under, how is it going to work?" Tuchman says.
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Parents worry about future risks
Some of the financial issues that parents of autistic children face are the same as those faced by parents of children with other kinds of disabilities. But some are unique, according to Adam Beck, assistant professor of health insurance and the director of the MassMutual Center for Special Needs at The American College.
Even among people with autism who appear to be high functioning, there is a "high risk of gradually becoming unable to work," says Beck. "How do you plan for the possibility that you'd become unable to work in your 30s or 40s?" he asks.
One in 68 children has autism disorders, according to the U.S. Centers for Disease Control and Prevention. If you have a child with such special needs, here's advice about ways to approach planning for retirement when autism is part of the picture.
Start by getting a solid diagnosis. Autism disorders can be difficult to diagnose, but it is important for a child to have an authoritative one. Tuchman found that it can be a challenge -- and a significant expense -- to get the right diagnosis. "Genetic testing is like black magic. It seems like we're still in the dark ages," he says. But getting a diagnosis nailed down can mean the person may qualify for treatment and other benefits throughout his or her life -- long after parents aren't around to help.
“Getting a diagnosis nailed down can mean the person may qualify for treatment and other benefits throughout his or her life.”
Evaluate your child's unique situation. Children with Asperger's syndrome, a high-functioning end of the autism spectrum, may not need help making a living, Beck says. But it still might make sense to set up a plan for that child that differs from the one you make for another child without the disorder. Putting an individual with autism in a position where they manage money could be a mistake. "Someone with a business might decide to give one child an ownership stake, while giving the child with autism something else," Beck says.