Understanding support preferences of parents and carers of autistic individuals
The biggest support to autistic individuals is their loved ones but there are limited and often fragmented services available to them. Image: peopleimages.com — stock.adobe.com
A Federation University researcher is calling on parents and carers of autistic individuals to share their experiences as part of a new study exploring the support available to families.
PhD candidate Lauren Salajan says the biggest support to autistic individuals is their loved ones, but there are limited and often fragmented services available to them.
"Research shows that parenting an autistic child leads to increased stress, reduced mental health, reduced physical health and even early mortality of mothers," Ms Salajan said.
“But we don’t know enough about how we can better support.”
The study is inviting parents and carers of autistic individuals, as well as allied health professionals, to take part in a one-to-one interview to help shape more effective and accessible support for families.
A separate study will investigate the health of parents across parenting cohorts via a survey, and this study aims to then identify the supports that parents find to be most family-centred and accessible.
"Research with autistic adults indicates that the most valuable supports for them have been health and well-being services, communication supports and the support that partners, parents and/or carers have been given," Ms Salajan said.
“By deepening our understanding, we hope to advocate for more effective and inclusive support systems for parents and families – with the ultimate goal of better supporting autistics themselves."
While current research indicates that available support systems have been expanded, Ms Salajan said significant gaps remain.
"Sometimes families have a whole out-of-pocket cost, or there's limited Medicare rebates," said Ms Salajan.
"It's difficult for people to find providers who are knowledgeable and care about autism. The wait lists are very long, and costs are high. Parents often need to stop working, or work much less, to assist the household and help the family better cope.
"It's not just fighting for funding, it's navigating healthcare and education systems – just to get the help that's needed. But this has huge administrative and emotional tolls on families and parents."
A recent study also showed that while autistic individuals make up the largest group of NDIS participants, many still struggle to access adequate support.
"Autistics are the largest group of NDIS participants. Having said that, many autistic people have been unable to secure funding from the NDIS," she said.
"One of the real barriers is the administrative burden – how much emotional and cognitive toll it takes to go through that process. Another separate but related barrier is that autistics or families sometimes don't know the bureaucratic terminology to use to help facilitate access."
Ms Salajan hopes the study will give families and carers a stronger voice in how autism-related services are designed and delivered.
“Families understand better than anyone what works and what doesn’t. Their perspectives are vital if we want systems that genuinely meet their needs,” she said.
The study to better understand support preferences of parents is open to parents and carers (18+) of autistic individuals and allied health professionals (18+) who work with these families. Participation is confidential and voluntary. Participants can give their opinions, experiences, and wish list regarding supports they have or have not received. To register your interest, visit: https://www.surveymonkey.com/r/LQ5C3NP
The study investigating the health of parents of autistics – through an anonymous five-minute online survey – is open to all parents and carers (18+), and is available here: https://federation.syd1.qualtrics.com/jfe/form/SV_3elEp4H5qKSBteS
Lauren Salajan is supported by an Australian Government Research Training Program (RTP) Fee-Offset Scholarship through Federation University Australia. She is also supported by a Stipend Scholarship through the Regional Research Collaboration Program along with The Healthy Regions InterVEntion (THRIVE).