Families living with a child with severe autism are more likely to suffer emotional burnout, a study has found.
A team led by researcher Xue Ming, of Rutgers New Jersey Medical School, found families with an aggressive child experienced more isolation and burnout.
Xue Ming’s research found families living with autism can be accused of child abuse. Image courtesy of Nick Romanenko/Rutgers University
The study surveyed 25 caregivers of 16 children with autism aged two to 20 years old.
It assessed how their care affected family dynamics, physical and mental health, and social functioning.
Accused of child abuse
The research found families face high physical, mental and emotional burdens. They also sometimes faced ridicule and accusations of child abuse.
Nine of the 16 families reported being ridiculed or accused of child abuse. They said this limited opportunities to attend social events and visit public places like churches, supermarkets and restaurants and use transport.
‘No framework to protect families’
Yvonne Newbold runs the Facebook group Special Educational Needs and Disabilities Violent and Controlling/Challenging Behaviour (SEND VCB).
Newbold, whose son Toby, 25, has autism and a severe learning disability, said the research chimes “hugely” with her experience.
Sixty-year-old Newbold, from Wallington in London, said “there is no framework to protect families” and this can see parents “being blamed and often losing their children as a result”.
Emotional burnout leading to isolation
Isolation was greater in families reporting significant emotional burnout. But families with more than one caregiver experienced less burnout and isolation.
The research also found co-occurring disorders were common in the children.
Professor of neurology Ming said the findings showed communities must “improve their inclusiveness” and highlighted the need to “raise public awareness of the burdens faced by these families”.
She said the research also demonstrates the need for better resources to improve quality of life.
The findings appeared in the International Journal of Autism & Related Disabilities.
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Published: 11 February 2020
