‘Ignored, dismissed, out in the cold’ – parents of children with ASD share their experiences
Parents of children living with autism spectrum disorder (ASD) have shared their experience of working with medical practitioners as they navigate initial concerns for their child, further investigations, and finally, formal diagnosis.
The voices of these parents, shared as part of a meta-synthesis of 22 international studies, conducted by Uni SA, will be of interest to those working in the early childhood education and care (ECEC) sector, as they seek to understand more deeply the lived experience of parents and families who are navigating this space.
Ultimately finding that first-line health professionals need to “vastly improve” their communication and engagement with parents if they are to help address the growing prevalence of ASD among children, the researchers consolidated the voices of 1,178 parents who were advocating for their children living with ASD.
Medical practitioners, researchers said, 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.
Symptoms of ASD, a persistent developmental disorder characterised by social difficulties, restricted or repetitive patterns of behaviour, and impaired communication skills, can range from mild to severe, with early signs often evident from early childhood.
One of the most prevalent developmental conditions among children, affecting one in seventy Australians, presentations of ASD have increased by an estimated 40 per cent over the past four years. Internationally, statistics are higher with one in 59 children on the spectrum.
UniSA lead researcher, Dr Kobie Boshoff, said the parent advocacy role is critical and must be taken more seriously by medical practitioners.
Dr Boshoff said parents are increasingly finding the diagnosis process overly stressful and complicated, commonly reported their concerns for their child were not being heard or taken seriously by medical professionals.
As a result, Dr Boshoff 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 said 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.
In order to build trust with parents, all those dealing with families in a professional capacity during the journey to diagnosis should “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 added.
“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 children.”
To read the research analysis, please see here.