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Families of Children With Autism Face Physical, Mental and Social Burdens

Families of children with autism face high physical, mental and emotional burdens, are sometimes ridiculed and even accused of child abuse, according to a Rutgers study.

The findings were published in the International Journal of Autism & Related Disabilities.

The study surveyed 25 caregivers of 16 children ages 2 to 20 with autism spectrum disorder to evaluate how their care affected their family dynamics, physical and mental health, and social functioning. The researchers also asked about the caregivers’ worries, daily activities, family relationships and insurance.

“While the understanding of how autism spectrum disorders impact individuals has grown, the awareness of the burden on families who care for these individuals is less established,” said Xue Ming, a professor of neurology at Rutgers New Jersey Medical School. “Caring for loved ones with autism spectrum disorder is emotionally and physically taxing.”

The study found:

Nine of the 16 families in the study reported being ridiculed or accused of child abuse, which they said limited them from attending social events, visiting public places such as churches, supermarkets and restaurants, and using mass transportation.

“This suggests that communities need to improve their inclusiveness for families with children with autism spectrum disorder,” Ming said. “The study shows there is a need to raise public awareness of the burdens faced by these families and to alert medical providers to provide them with more support.”

The findings also can be used to advocate for better resources for these children and families to improve their quality of life and reduce stress, she said.  

Other Rutgers co-authors included Binhao Wu, Max Yang and Apoorva Polavarapu.

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