Parents who advocate for their children with autism feel ignored and dismissed by medical practitioners when navigating initial concern for their child as well a further investigations, and a formal diagnosis of autism.
The findings were made after the University of South Australia (UniSA) undertook a meta-synthesis of 22 international studies.
The researchers said medical practitioners needed to adopt a family-focused approach to ensure that parents’ concerns, perspectives and observations were taken seriously so that their child has appropriate and timely access to early intervention services.
Autism spectrum disorder (ASD) is a persistent developmental disorder characterised by social difficulties, restricted or repetitive patterns of behaviour, and impaired communication skills. The symptoms can range from mild to severe, with early signs often evident from early childhood.
Autism is one of the most prevalent developmental conditions among children, with one in 70 people in Australia on the spectrum, an estimated 40% increase over the past four years. Internationally, statistics are higher with one in 59 children on the spectrum.
UniSA lead researcher, Dr Kobie Boshoff, says the parent advocacy role is critical and must be taken more seriously by medical practitioners.
“Parents are natural advocates for their child, making them an invaluable source of information when it comes to complex diagnoses for invisible disabilities like autism.
“Yet parents are increasingly finding the diagnosis process overly stressful and complicated.”
“In this study, parents commonly reported their concerns for their child were not being heard or taken seriously by medical professionals. They said they felt confused, stressed and frustrated at the lack of support and understanding,” Dr Boshoff said.
“They also reported lengthy delays in receiving a diagnosis for their child, as well as a variety of unsatisfactory explanations as alternatives to autism. As access to early intervention services is essential for improving the development outcomes of children with autism, this too is unacceptable.”
Dr Boshoff said to build trust medical practitioners must reassess the way they talk and engage with parents.
“First line health professionals and diagnostic services must ensure emotional support is provided to parents throughout the diagnosis process, engaging parents as partners and taking their concerns seriously.
“Autism spectrum disorder is a lifelong developmental condition. A positive experience in the early stages of diagnosis can deliver better relationships with future professionals, and most importantly, secure better outcomes for the children.”