(Medical Xpress)—A lack of collaborative support for the mothers of children with autism reaching school age is causing them high levels of stress, according to a Curtin University study.
The School of Occupational Therapy researchers gathered data through in-depth interviews with seven mothers of children with autism focusing on their experiences of managing their emotions as well as their family's lives.
The responses were then analysed using the phenomenological analysis method which looks at how people make sense of situations or events.
Study author Dr Annette Joosten says they found mothers of children with autism create their own strategies to manage their family and their own emotions but sometimes that was causing them more stress.
Dr Joosten says current research shows mothers of children with autism experience higher levels of stress and anxiety than other mothers of children with a disability.
She says the mothers interviewed asked for a stronger support network for when their children started school.
"We were particularly interested in mothers with children with autism once the children get to school age because it's often under-recognised just how stressful school is for the child," she says.
"Anxiety is a big issue, even for quite high-functioning children school is quite a stressful place, so lower-functioning students particularly need increased support.
"At a time when parents really feel that they need a lot of support, the amount of support that they have compared to what they had at the early intervention stage is really quite significantly reduced."
Dr Joosten says most of the intervention research to date is on early intervention.
"So a lot of our services are what we call family centre practice services where the whole family is looked after as well as the child," she says.
"Our real interest in the study was that family centre practices are taking the pathway of teaching mothers and parents to be self-advocates, to fight for services.
"But when we listened to these mothers, what they were actually telling us was while they valued being able to stand up for their child and advocate and educate people they didn't want to be doing that on their own, they wanted a collaborative effort."
Dr Joosten says she hoped the study reminds OTs, speech pathologists, psychologists and other professionals working with the families that family-centred practices are delivered in the manner families want.
"What the parents are wanting is a collaborative support effort rather than handing it all over and making it their responsibility," she says.
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"Management strategies of mothers of school-age children with autism: Implications for practice." Joosten AV, Safe AP. Aust Occup Ther J. 2014 Feb 6. DOI: 10.1111/1440-1630.12116. [Epub ahead of print]