UniSA research finds parents of children with autism need medical professionals to listen and offer better support
UniSA research shows parental concerns about their child’s development are often dismissed or ignored, causing frustrating delays in the diagnosis of autism.
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Parents of children with autism are often confused, stressed and frustrated by a lack of support and understanding from medical professionals who should know better, UniSA research shows.
A systematic review of the published literature shows parents often experience lengthy delays in diagnosis, no matter where they are in the world, though the problem is more severe in remote and rural areas.
UniSA’s senior lecturer in occupational therapy, Dr Kobie Boshoff, was lead author of the research published in the journal Health & Social Care in the Community.
“As an occupational therapist with a background in working with children with disabilities and developmental delays, we hear these stories very often about how parents almost need to make a case in order to be heard,” she said.
“Early intervention is absolutely critical, so any professional who comes into contact with a parent needs to listen and address their concerns so that action follows.”
The team searched the literature and identified 22 international studies, drawing on the voices of 1178 parents advocating for their children with autism during the process of diagnosis.
“Our findings highlight the intense emotional journey for parents during identification of their initial concerns and the formal process of diagnosis, and their perceptions of not being supported by others on this journey,” the authors wrote.
They hope to encourage service providers to reconsider their communication style and build a parent-practitioner partnership.
Lisa Porter, 55 of Glenelg East, moved to Adelaide from Port Lincoln 15 years ago seeking a diagnosis for her daughter Mahlet, now 17.
“You know something is wrong,” Ms Porter said.
“It’s like the mystery illness, even if it’s the worst news ever, you just need someone to tell you, so you can make a plan and move forwards.
“As soon as we had the diagnosis, I could be referred to Autism SA and all of a sudden there was this wealth of knowledge at my fingertips, I could really start getting some skills for helping my child and get her into services that were really driven specifically for her needs.
“That was empowering … but it was a fight to get there.”
Hear from Dr Boshoff and Ms Porter at the free Healthy Development Adelaide event, Research and Developments in Autism: A SA Perspective, on Wednesday, October 30 from 5.30pm to 8pm in the University of Adelaide’s Napier Lecture Theatre.
Register at Eventbrite.com.au