Dec. 2 -- MONDAY, Dec. 1 (Health Day News) -- Parents of autistic children are more likely to see their sons or daughter's special health needs go unmet, a new government report shows.
Data from the National Survey of Children With Special Health Care Needs also indicated that when compared with families that have kids with other special emotional or physical needs, parents caring for autistic children face a significantly greater financial burden -- given that many must cut back their work schedule or quit their jobs altogether to care for their autistic child.
"Families of kids with autism were impacted much more strongly by the condition than the other groups, across all indicators," said study author Michael D. Kogan, director of the office of data and program development with the Maternal and Child Health Bureau at the U.S. Health Resources and Services Administration, based in Rockville, Md.
Kogan and his colleagues publish the findings in the December issue of Pediatrics.
Recent National Institute of Health estimates suggest that as many as one in 166 children have some form of autism spectrum disorder (ASD) -- a constellation of conditions including autism, Asperger syndrome and pervasive developmental disorder. Children with ASD account for 5.6 percent of the larger pool of children coping with some type of special health-care need, the authors noted.
To get a handle on the real-world experience of caring for such kids, Kogan and his team analyzed 2005-2006 data concerning 2,088 children between the ages of 3 and 17 who were reported by their parents to have ASD.
In turn, the ASD group experience was compared with that of a second group of parents caring for another 9,534 children diagnosed with "other emotional, developmental or behavioral" problems. Both groups were also compared with a third pool of almost 27,000 children coping with a wide range of other special-care needs, running the gamut from allergies to cerebral palsy.
The research team found that the families of children with ASD were more likely to develop financial difficulties in the face of their child's medical expenses.
As well, ASD families were more likely than other special-needs families to have their child's health-care needs go unattended or delayed, while facing insufficiencies or obstacles in terms of getting the medical care they needed.
"There were no differences [across special-needs groups] in having a usual source of care or having a personal provider or nurse," Kogan noted. "But where the special problems show up for families with autistic children is when they get beyond the primary point of contact. Then there's a difficulty getting referrals, coordinating care, and dealing with unmet needs for family support services."
In terms of the particular financial hardship associated with caring for an ASD child, the researchers noted that 57 percent of such families had to reduce or stop working because of their child's needs. This compared with 36 percent and 17 percent, respectively, among parents in the second and third special-needs groups.
These parents were also found to be more likely than parents in the other groups to have spent 10 or more hours per week giving or arranging care for their child -- care which cost more than $1,000 out-of-pocket in the prior year.
Laura Bono -- former chair of the National Autism Association, and herself the mother of an autistic teenager -- said she was not surprised by the findings, and noted that the emotional and financial demands placed on parents of autistic children are "absolutely enormous and stressful."
"Of course, I don't want to minimize the responsibilities related to caring for children with any other special need," she said. "But the level of functionality among autistic children is different, and it means they need 24/7 support. Which is a huge burden -- in the financial area, the educational area, and the appropriate medical-needs area."
Bono -- who currently serves on the board of "Safe Minds," a nonprofit advocacy group in Durham, N.C., focused on childhood neuro-developmental disorders -- explained how thoroughly the needs of an autistic child can alter a family's routine.
"Even if an autistic child is well enough to go to school, schools are often only half a day or so, so many parents choose to stay home so someone is there," she noted. "And many insurance plans won't cover all the things an autistic child needs, because they view the situation as a developmental disorder, not a disease. So, you have to pay huge expenses out of pocket. Otherwise, you just can't get occupational therapy. You can't get speech therapy. You sometimes can't even get basic blood work at your pediatrician. It's a real struggle."
For more on autism, visit the National Institute of Neurological Disorders and Stroke.
SOURCES: Michael D. Kogan, Ph.D., director, office of data and program development, Maternal and Child Health Bureau, Health Resources and Services Administration, Rockville, Md.; Laura Bono, former chair, National Autism Association, and board member, "Safe Minds," North Carolina; December 2008, Pediatrics