Study Finds Autism More Challenging For Caregivers
Caregivers of kids with autism report more trouble accessing services and a greater impact on their families than do parents of children with other developmental disabilities.
Despite having some similar needs, a new study indicates that the experiences of families living with autism differ significantly from those with intellectual disability, cerebral palsy, Down syndrome and other developmental disabilities as well as those with mental health conditions.
For the study, researchers looked at survey data collected through the federal government’s 2009–2010 National Survey of Children with Special Health Care Needs. They focused on responses from more than 18,000 caregivers of children ages 3 to 17 with autism, other developmental disabilities or mental health conditions.
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Caregivers of children with autism more frequently cited difficulty obtaining services due to eligibility, availability, appointment delays and trouble getting information about offerings, according to findings published this week in the journal Autism.
What’s more, those affected by autism more often said they had problems with shared decision-making and lack of coordination with care providers. They were also more likely to say that they’ve experienced a financial burden or left a job because of their caregiving responsibilities or that they had inadequate insurance coverage to meet their child’s needs.
The researchers behind the study said their findings suggest that the needs of those with autism are not being sufficiently addressed.
“Children with ASDs form a vulnerable population within the group of (developmental disabilities) that may require greater provider and caregiver attention as compared to children with (other developmental disabilities and mental health conditions),” wrote Rini Vohra of West Virginia University and her colleagues. “Our findings also suggest that caregivers of children with ASDs may require services and care that extend beyond that provided by the current health-care system.”