Off a cliff, without a parachute: Parents left in the cold when it comes to kids with autism

First-line health professionals must vastly improve their communication and engagement with parents if they are to help address the growing prevalence of autism among children, say researchers from the University of South Australia.

Undertaking a meta-synthesis of 22 international studies, researchers consolidated the voices of 1178 parents advocating for their children with autism, finding that parents feel ignored and dismissed by medical practitioners as they navigate initial concerns for their child, further investigations, and finally, a formal diagnosis of autism.

Researchers say that medical practitioners need to adopt a family-focused approach to ensure that parents’ concerns, perspectives and observations are 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 per cent 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,” Dr Boshoff says.

“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.

“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 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 role, which can significantly impact future relationships with other professionals.

She says 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,” Dr Boshoff says.

“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.”


A study shows parents of autistic children are waiting too long for a diagnosis and need more help.

Parents of autistic kids 'need more help'

Finbar O'Mallon

Australian parents are struggling to get a diagnosis for their children with autism and are left feeling ignored by medical professionals, new research shows.

A University of South Australia study released on Monday reviewed 22 international papers on the condition, finding parents often face lengthy delays getting a diagnosis, or unsatisfactory alternative explanations.

Researcher Kobie Boshoff said medical professionals need to take seriously parents seeking a diagnosis for their children.

One in 70 Australians are estimated to be on the autism spectrum, with autism spectrum disorder leading to developmental difficulties and problems with social behaviour or communication skills.

While symptoms can range from mild to severe, autism can be detected in early childhood.

The report said the diagnosis process was "intensely emotional" for parents and a more family-focused approach to build trust between doctors and parents was needed.

Dr Boshoff said medicos needed to reassess the way they engaged with parents, with better experiences in the early stages of diagnosis meaning better outcomes for kids

"[Parents] said they felt confused, stressed and frustrated at the lack of support and understanding," Dr Boshoff said.

The paper pointed to the different variations in diagnosing autism spectrum disorder in different states and territories.

It also found ethnic background and parents living in rural areas presented challenges.

Dr Boshoff said doctors and service providers needed to ensure emotional support for parents.

The number of autism spectrum disorders had also increased by 40 per cent since 2015, when the number of people with autism was estimated to be one in 100.

Internationally, diagnosis rates show one in 59 children are on the autism spectrum.

Australian Associated Press


Editor's note: the figures presented above are not consistent with Australian data.