Chinese parent' experiences of early supports for their autistic children in Australia.
Over the course of a year, L4Life Head of Allied Health, Sarah Wood, and Speech Pathologist/Clinical Consultant, Nilushi Goonetilleke, collaborated on a research study providing first-hand experiences of the diagnosis and early intervention process in Australia of migrant Chinese parents of autistic children.
The study, undertaken in collaboration with Autism Partnership, La Trobe University (Head Researcher: Dr. Jodie Smith), Learning For Life Autism Centre, Positive Partnerships and a Chinese advisory group including Chinese parents of autistic children will have implications in the provision and presentation of information surrounding early intervention to culturally and linguistically diverse (CALD) families.
The study found that:
- Chinese parents of autistic children face unique challenges when navigating autism services, including language and cultural barriers.
- Parents from culturally diverse backgrounds face barriers in developing their knowledge and autonomy in accessing support due to a shortage of providers fluent in their primary language and the complexity of overwhelming information available elsewhere, making it challenging for them to make informed decisions for their child's needs or seek alternative providers.
- Despite the challenges presented parents still managed to find effective support for themselves and their children: utilising informal networks; educating themselves in Early Intervention; and finding an experienced and key person in the disability sector.
- Parents had a more positive experience when they were able to: find support within the Chinese community; access quality Early Intervention services; and genuinely connect with professionals who considered the wellbeing and individual needs of both the child and their family.
It is hoped that these findings will encourage NDIS providers and other autism support services to review their provision and presentation of information tailored to CALD families, with consideration to the identified cultural and language barriers outlined. Such clarification will help CALD families find the appropriate support, understand a diagnosis and its implications, access NDIS and Medicare funding and feel confident and comfortable in seeking clarification.
“This experience was eye-opening as it highlighted the impact of the health and funding systems on families with CALD backgrounds and their ability to access resources and services for their children. The results of this study gave us insight into the barriers that families from CALD backgrounds face; ensuring that we present information to families to help them with accessing different support systems that are relevant to them. The study presented a great opportunity to reflect on our practices as clinicians; the results will inform changes made to engagement made with families from different CALD backgrounds to ensure we bolster their ability to access resources and services” says Speech Pathologist, Nilushi.
According to Head of Allied Health Sarah: “It was a pleasure to be a part of this research. It was so interesting to hear about the families' experiences and reflect on how we can use the results to inform how we work with Chinese parents going forward.”
“At L4Life, research underpins everything we do. We are constantly evaluating what we do to ensure that we can confidently say that we are always providing evidence-informed services. A study such as this goes beyond the evaluation of specific programs and helps us understand how we should present information about, and foster access to, our programs to those communities who need it.” says CEO, Pam Roy.
You can read the study in full at www.sciencedirect.com/science/article/pii/S1750946723001277
