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Health Needs of Autistic Children Often Unmet
Date:12/1/2008

l 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 amo
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