WHEN Yarragon mum Bronwyn Davis’ four year-old daughter Aislinn was diagnosed with autism last year, she soon discovered the difficulty of finding support.
The challenges of finding specialist advocacy service for people with Autism Spectrum Disorders led her to create Support and Advocacy for Autism Spectrum Individuals and Families, an support service, to fill the void.
“There is a feeling of isolation because you don’t know where to go for help; there is no clear picture or answer to questions,” Ms Davis said.
“There are many services out there and some doing a fantastic job, but tapping in to those services can be difficult.”
She said a lack of specialist advocacy support meant parents do not have someone to adequately represent them and were often forced to “go at it alone”.
“This is something the majority of us are poorly equipped to do,” Ms Davis said.
“When a child is diagnosed with an ASD, their parents feel completely overwhelmed and are often at a loss about where to seek help and how to deal with the emotional impact on their family.”
She said SAAIF was developing a state-wide network of advocates aimed at educating individuals and families on how to self advocate.
Ms Davis said it would also help create greater community awareness about what it means to have autism.
“One of the key components of SAAIF is the online resource tools that will work as an autism road map,” she said.
“People will actually be able to see the journey they can take, from pre-diagnosis right through to adulthood and different life stages.”
She said the “road maps” aim to assist parents and teachers to have a greater understanding of relevant services.
Ms Davis said the website would work as a forum to respond to common concerns such as people’s reactions to the diagnosis, whether ASD children could attend mainstream school, the ability to be employed, assistance with fitting them in to a friendship group, support services and financial assistance.
“It will be our job to not only answer these initial questions but to also provide ongoing support,” she said.
“We will do this by creating and coordinating a network of fully trained and certified advocates across Victoria to ensure all ASD affected individuals and families have access to an advocate regardless of where they are.”
Ms Davis said while access to advocates trained in autism-related issues was a key component of the service, it was just as critical to provide families and autistic children with the necessary guidance and resources to become “their own best advocate”.
“We will do this through the provision of online and offline resources and tools such as member forums, letter templates and video examples of self advocacy and family advocacy in action,” she said.
“Equipping individuals with the courage and education to self advocate is not just about upholding their rights to education, employment, housing and equal opportunities.
“It’s about giving them a sense of self-worth and encouraging acceptance so they too can experience life as a valued member of the community.”
While the organisation has faced some challenges, Ms Davis said the goal was to launch the service nationally within the next three years.
She urged families and relatives of children with ASD to provide input about the purpose, principles, structure and precise nature of the new service.
“Breaking new ground to deliver a quality, autism specific advocacy service is a big challenge and we want to ensure we get it right, delivering exactly what parents, children, teenagers and adults affected by autism need to make their own journey a little less challenging,” Ms Davis said.
People interested in becoming Founding Reference Group participants or to provide input, express their interest in becoming a board member or advocate, or to make a donation, should visit www.saaif.org.au or for more information phone 1800 778 008.