Parents feel ignored over autistic children

Parents seeking help for children with autism feel ignored and dismissed by first-line health practitioners, say researchers from the University of South Australia.

The finding came from a meta-synthesis of 22 international studies in which researchers consolidated the voices of 1,178 parents advocating for their children with autism.

The parents’ feelings of being ignored and dismissed by medical practitioners arose not only as parents shared initial concerns for their child, but also during further investigations, and even at a formal diagnosis of autism.

Researchers say medical practitioners must adopt a family focused approach to ensure that parents’ concerns, perspectives and observations are taken seriously so their child has appropriate and timely access to early intervention services.

Autism spectrum disorder 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.

It is one of the most prevalent developmental conditions among children, with one in 70 people in Australia on the spectrum, an estimated 40 per cent increase over the past four years.

UniSA lead researcher Dr Kobie Boshoff said 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,” she said.

“In this study, parents commonly reported their concerns for their child weren’t being heard or taken seriously by medical professionals. They said they felt confused, stressed and frustrated at the lack of support and understanding.

“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 is unacceptable.”

Dr Boshoff says first-line medical professionals and service providers must recognise both the role of parents as advocates for their child, and the importance of the parent-practitioner relationship, which can significantly impact future interactions with other professionals.

“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,” she said.

“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.”

Champions Club Australia National Director Amy Hood has first-hand experience of the parents’ journey. She says nothing can prepare the parent for their child’s autism diagnosis.

“The initial stages are overwhelming, from receiving a diagnosis, to finding therapies, and trying to navigate the NDIS,” she said. “There’s an enormous amount of information.

“What [health professionals] don’t prepare you for is the grief that all special-needs families walk through following a diagnosis. If there’s anything they need to get more intentional about, it’s giving families some hope to hang on to.”

Information and support for Autism can be found here.

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