Study highlights unique financial burden of parents of autistic children
Between therapy sessions and at-home care, parents struggle to earn a living and provide the necessary help for their autistic children.
Mon, Mar 19 2012 at 7:27 AM
Adriana Lara, a mother in Hutto, Texas, is not able to work because her 5-year old son Joshua has autism. Lara must stay home to give Joshua the care he needs, and to drive him to his therapy sessions five days a week.
"It's just impossible for me to be able to hold a job and do all these things with Josh," Lara, 31, said. The family depends on the salary of Lara's husband, a psychologist at a Veteran's Affairs hospital.
Joshua's therapies, including speech, music and occupational therapy, cost about $5,000 a month. Eighty-five percent of the cost is currently covered by a government grant, but the grant will run out this summer, and the family's insurance policy won't cover Joshua's therapies, Lara said.
"We don’t know how we're going to afford it," Lara said. While public schools offer autism therapies, Joshua's school does not offer the type of intensive therapies he needs, Lara said. For instance, the therapies provided by Joshua's school are not one-on-one, Lara said.
A new study highlights the unique financial burden faced by families of children with autism, like Lara's. The burden is particularly significant for mothers, the study finds.
On average, mothers of autistic children earn $14,755 less per year than mothers of healthy children, and $7,189 less per year than mothers of children with other health conditions (such as asthma and ADHD) that limit their ability to engage in childhood activities, according to the study.
Despite the fact that they tend to have completed more years of education, mothers of autistic children are 6 percent less likely to be employed, and they work on average 7 hours less weekly than mothers of healthy children, the researchers say.
"We don't think that autism creates more of a strain on the family per se than other chronic conditions of childhood," said study researcher David Mandell, associate professor of psychiatry and pediatrics at the University of Pennsylvania School of Medicine. "I think the reason these mothers are leaving the workforce is because the service system for children with autism is so fragmented," Mandell said.
Health care and workplace policies need to recognize the full impact of autism, and alleviate costs for the families with greatest needs, the researchers concluded, writing in the March 19 issue of the journal Pediatrics.
Higher bills, lower salaries
About 1 in 110 children in the United States have an autism spectrum disorder, a developmental disability that can cause language delays, impaired communication skills and social challenges, according to the Centers for Disease Control and Prevention.
The new study results are based on yearly surveys of U.S. households conducted between 2002 and 2008. The study included 64,349 families with healthy children, 2,921 families of children with other health limitations and 261 families of children with autism.
While fathers' salaries, by themselves, were not affected by having a child with autism, total family income was, the study showed. On average, families with autistic children earned $17,763 less than families with healthy children, and $10,416 less than families with children with other health limitations.
As Lara's story shows, having a child with autism may limit the parents' abilities to work because these children require more care. Finding quality, specialized childcare for autistic children may be difficult and costly, the researchers say.
"A traditional daycare setting really is really not conducive," for children with autism to thrive, said Carolyn Price, whose 7-year old son has autism. Autistic children are very sensitive to sights and sounds, and may be overwhelmed at a day care, Price said.
When Price's son was in daycare — before he was diagnosed with autism — he would bite other children because he couldn't cope with the environment, Price said. In addition, autistic children need one-on-one interaction that is generally not feasible at day care, Price said.
When Price's son, also named Joshua, was young and had to be at home, she and her husband felt uncomfortable having anyone beside themselves or close friends look after him.
"It's really challenging when you have a child with special needs, to really turn that responsibility over to someone else and feel like they are getting the best care," Price said. Price's husband Joel still works only part time, so he can drive his son to therapy sessions.
Children with autism need to be immersed in their therapies in order to benefit, Price said. Providing therapy one day a week, when a child needs five sessions, won't have the same impact, Price said.
In 2010, Price and her husband started a non-profit organization called Imagine a Way to provide financial assistance to families with autistic children. The organization focuses trying to provide funds to support for children for two years.
While other nonprofits and government subsidies offer support to families of children with autism, it's often comes in the form of a little bit at a time, Price said.
"There's a recognized need for it, I just don't think there's a consolidated organization like Autism Speaks, that’s able to do something on a major scale," Price said. While any source of funding is valuable, "For the magnitude of what these kids need, a little bit is just not enough," Price said.
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