Some families’ experiences of diagnosis

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Families talk about how information from their child’s diagnosis helped them on their journey.

Knowledge to get help for your child

Getting a diagnosis can help you get some solid answers about what is happening for your child. It can also give you more ideas about what you and others can do to help them. This can help your child at home and at school, as Aunty Faye says.

One part of this journey is being real and understanding your child’s diagnosis. It’s about asking questions like, “What does it mean?”, “Where do I go?”, “Who do I see?”, “What are their needs?”. It’s about getting the right support for your child. This is what we call advocacy.

This website may be a starting point, to help you find those answers and be an advocate for your child. There are also people out there and in community who are trained advocates. They can help you.

A way to keep cultural identity strong

Being an advocate means meeting with professionals, schools and medical people and talking to them about what’s happening for your child – emotionally, socially, spiritually and culturally – and what they need. This is a strong way to keep cultural identity, and to make sure that their support meets your child’s and family’s needs.

Being an advocate on top of being a parent or carer can be tiring and frustrating. But importantly, it is also rewarding, as you are bringing cultural knowledge and behaviours into the disability world, so professionals can relate to your child and family with cultural sensitivity.

Knowledge to help your family

Looking back, Rodney says that knowing more about his son’s autism has made their relationship stronger. At first, he left a lot of that learning to Suzanna, because of his cultural ways. Now Rodney now pushes himself to do it too. He encourages other parents and carers – especially dads – to do the same.

When Stacey got the diagnosis for her young one, it made sense of her gut feeling that he had different needs, and gave her information that made everyday life better for both of them. Support from a community or disability advocate then helped Stacey to sort out the right pathways for her boy, and to bring together the shared knowledge of mainstream and cultural understandings of how to support him.

Make sure your child gets help at school

Every special need requires a different kind of support, so the child can learn well. If school doesn’t understand your child’s needs, they might miss out. Some children go very quiet if they don’t get the right help in school. They might ‘slip through the cracks’ and drop out, without anyone realising they needed help. Some children get frustrated and muck up. As a Koorie educator, Aunty Faye has seen many children labelled with behavioural problems.