Regional families with autism struggle more: study

Submitted by bobb on Fri, 11/7/2014 - 14:02

By Charlotte King

A study has been released suggesting the pressures being faced by regional and rural families caring for a child with autism are greater than those in metropolitan areas. 

Carers and their families are fundamental to the quality of life for people living with autism, yet the far-reaching impact of this job can be overlooked.

A Mildura study is looking into the impact on families and carers of caring for a person with autism or Asperger's, in particular how their finances, employment, health and social connections are affected by this role.

"What didn't come out in the ABS data and the usual data was that there'd been a gap in autism services," says Lydia Senior, the chief executive of Lower Murray Medicare Local, who commissioned the report.

"But when you talk to people, that came up; every consultation we went to, somebody in the audience mentioned autism is a big gap, there is nothing for us."

Ms Senior contracted a consultant to draft up a survey that was handed out to 101 families in the region, who were then asked to answer questions revolving around how having a family member or members with autism affected the unit as a whole.

The results indicate that most of the people living with an autism spectrum disorder in the region were young boys being cared for by their mothers, with those women having lower educational qualifications as a result.

Two in five of the survey group had a relationship breakdown since caring for the child, while others reported significant tension in the family and an increase in disagreements with friends and relatives.

A high number of respondents faced considerable financial difficulities during their caring role, with over half the sample reporting exhaustion and others, social isolation.

The city country divide

Ms Senior says many of the respondents reported difficulties in accessing professional and clinical services, which are only subsidised by the Government up until the child is seven.

"If you're prepared to wait 18 months to see a psychologist and two years to see a speech pathologist, and another two years to get your diagnostics done, you're seven already - you've lost your funding."

"And that was the issue, it was the time factor, so people were waiting so long for the diagnosis, not knowing what was wrong with the child."

"People started to talk about the impacts of what that has on the family unit, the stress it creates," she says.

The study makes the suggestion that the gaps in services make the pressures more significant for country families caring for someone with an austism spectrum disorder.

"In rural and regional areas that have few resources to assist families and those individuals with an ASD themselves", the study states, "the pressure and stress faced by families is at a greater level than it is for families in metropolitan areas who have access to various types of medical and therapeutical support."

Looking for answers

Ms Senior says the Medicare Local group has responded to the survey by funding local sessions of Applied Behavioural therapy training over the next six months.

"So we're going to open that to parents, and to teachers, and to carers," she says.

"We'll have about 80 people more skilled across the region, and hopefully that will be passed on to support groups; it's about the best we can do with funding for this coming year, but it'll be a significant improvement on what we've got now," says Ms Senior.