Profound financial life changes plague families of children with autism

The information that a child has been diagnosed with autism often throws parents into an emotional tailspin.

A new study from a University of Missouri researcher says most people don't immediately consider the major financial struggles that follow. She suggests more outreach is needed to help families plan and cope with the profound financial life changes they may face.

"As a parent, the diagnosis of autism upends your world," said Deanna Sharpe, associate professor of personal financial planning in the MU College of Human Environmental Sciences and whose own son was diagnosed with the disorder. "It is important for us to hear the voices of families who have financial struggles. There is strong pressure to do everything you can for your child. However, there is a great potential for families to spend a lot of money on therapy or new ideas that may be ineffective. Careful evaluation of therapies is important."

Some of the costs include specialized child care, speech and language therapy, other types of one-on-one therapy, special interventions, and costly food or drug supplements. Applied Behavior Analysis (ABA), a widely respected and recommended behavioral intervention, can be expensive. This intervention requires children to work one-on-one with a trained therapist for 30 to 40 hours each week. In the study, some parents reported paying as much as $30,000 a year for ABA therapy. Parents whose child with autism was destructive also reported paying compensation and replacements costs for items that were destroyed.

Some families quoted in the study reported skipping meals to be able to afford therapy for their children. Others talked about robbing their future by depleting savings, emptying their 401K plans, selling stocks and even filing for bankruptcy. More costs are added to some families who need counseling and medication for themselves in order to cope with the stress of raising a child with autism, further straining the family budget.

Sharpe says it is important to begin financial planning as soon as a diagnosis is made. She suggests financial planners need to help direct families to available resources and help them think seriously about the implications of spending all their retirement money on various therapies or having one parent step out of the job force to care for a child when other options could be available.

"Autism has a startlingly huge impact on society," Sharpe said. "We know early intervention can influence how well a child will do later in life. It's a human capital investment that can prevent or reduce the need for public support when a child with autism becomes an adult. However, it is costly to obtain this intervention."