A quarterly publication of the Autism Research Institute

The Autism Research Review International is quarterly publication of the Autism Research Institute

Winter, 2020 | Number 1, Volume 34

Families raising children with ASD face burdens

Families of children with autism spectrum disorders (ASD) experience significant physical, mental, and social burdens, according to a new study from Rutgers University. 

Xue Ming and colleagues conducted interviews with 25 caregivers of 16 individuals with ASD ranging in age from 2 to 20 years. The researchers found that the majority of caregivers reported experiencing burdens related to raising a child with autism, and about half of them reported family discord associated with caring for their child. They add, “Nine of the 16 families reported being ridiculed, misjudged for child abuse, or [viewed as] inappropriately submissive by the general public, thus limiting their child from attending to social events or places such as churches, supermarkets, restaurants, or public transportation, suggesting the inclusiveness of families with ASD in the general public remains to be improved.” The researchers also found that: 

• Emotional burnout was more common in families of children with low-functioning ASD and comorbidities. 

• Social isolation tended to occur in families who reported significant emotional burnout. 

• Families with more than one caregiver experienced less emotional burnout and social isolation than families with only one caregiver. 

• Families with higher incomes tended to spend more money on medical treatments that were not covered by insurance. 

• The age of the child did not affect the level of emotional burnout, social isolation, or familial discord. 

• Families with an aggressive and irritable child tended to experience more social isolation and emotional burnout. 

• Comorbid medical and/or behavioral disorders were common in the individuals with ASD. 

Families also reported positive aspects of raising a child with autism, including strengthening bonds with their partners, becoming more understanding of people in general, appreciating life more, and being inspired by their children. 

The researchers say their findings may encourage professionals to provide more support and resources for families caring for a child with ASD, and may help to raise public acceptance of children with ASD. 


Citations

“Family burdens of caring for a child with an autism spectrum disorder,” Xue Ming, Binhao Wu, Max Yang, and Apoorva Polavarapu, International Journal of Autism & Related Disabilities, November 8, 2019 (free online). Address: Xue Ming, Department of Neurology, Rutgers New Jersey Medical School, New Jersey, [email protected]

—and— 

“Families of children with autism face physical, mental and social burdens,” news release, Patti Verbanas, Rutgers University, January 2, 2020.