National study shows financial strain autism puts on families

From The AP Nov. 30:

CHICAGO - More than half a million U.S. children have autism with costly health care needs that often put an unprecedented financial strain on their families, national data show.

Compared with parents whose youngsters have chronic health care needs but not autism, those with autistic children are three times more likely to have to quit their jobs or reduce work hours to care for their kids. They pay more for their kids' health needs, spend more time providing or arranging for that care, and are more likely to have money difficulties, the study found.

"This is the first national survey that looked at the impact on families of having kids with special health care needs," said lead author Michael Kogan, a researcher with the government's Maternal and Child Health Bureau.

The results are from a nationally representative 2005-06 survey of nearly 40,000 children with special health care needs. These children have a broad range of chronic conditions, including physical and mental illness, requiring more extensive than usual medical care.

A total of 2,088 children with special health needs had autism, which translates to about 535,000 kids aged 3 to 17 nationwide, the study authors said.

The study appears in December's Pediatrics, being released Dec. 1.

Autism typically involves poor verbal communication, repetitive behaviors such as head-banging, and avoidance of physical or eye contact. Affected children often need many more types of treatment than kids with other chronic conditions, including speech and behavior therapy and sometimes medication. Kogan said that may explain the disproportionate strain on their families.

Jacquie Mace, whose 12-year-old son, Austin, has autism, said the study presents a "very realistic" picture of the challenges affected families face.

Mace said she spends "easily $15,000 to $20,000 out of pocket" yearly on supplies for behavior treatment she provides for her son.

She's still working to pay off a $7,000 bill for dental work Austin had last year. He has to be sedated and hospitalized for dental care because he can't sit still in a chair, Mace explained. Austin's health insurance doesn't cover any of it, she said.

Some states require insurers to cover certain autism treatment while similar proposed measures are pending in others, including Illinois.

Mace hasn't had to quit her job helping local families find autism resources, but knows of many parents who've had to leave work to care for their autistic kids.

She is divorced - another common casualty, she said, of the challenges of caring for autistic kids.