A landmark guideline is set to improve clinical practice for autistic children in Australia, explains Professor Andrew Whitehouse.
Australian’s first guideline outlining best practice for providing therapy support to autistic children and their families was launched in February this year, representing a landmark moment for autism.
It is the first time that a consensus view has been published on what represents best practice therapy for autistic children in Australia and having this clear and agreed definition goes a long way towards ensuring that Australian children and families receive high-quality, safe and effective therapies that support their development.
Autism in Australia
Autism became a formal diagnosis in Australia with the introduction of the third edition of the Diagnostic and Statistical Manual in 1980. But it was not until the fourth edition was published in 1994 that autism in Australia was diagnosed in large numbers.
The most common types of interventions for autistic children – now, more commonly referred to as ‘therapies’ or ‘supports’ – are not biologically based. They are therapies that are focused on directly supporting the learning, participation and wellbeing of autistic children, including changing the environment around the child. These therapies are most often provided by allied health practitioners such as speech pathologists, occupational therapists and psychologists.
While for many children, these therapies are supported by medication prescribed by medical practitioners, it is the non-biological therapies that this guideline is focused on.
Many therapies for autistic children have good evidence for their safety and effectiveness. However, like all areas of health and medicine, good practice is not uniform across the country. This can lead to confusion for children and families, and expose them to clinical practices that may be ineffective or harmful.
This issue has long been recognised in Australia. Over the past two decades, there have been important steps taken to provide increasingly better guidance to clinicians and policymakers about what represents good practice. However, there hasn’t been a Guideline until now that was developed using internationally agreed methods.
This guideline has been developed to help ensure that practitioners who provide therapies to autistic children and their families do so in ways that are safe, effective, and desirable.
How it was developed
The guideline was developed by the Autism CRC, which brought together a group of researchers, clinicians, and autistic people to consult with more than 1000 community members.
These community voices were then combined with evidence from three systematic reviews of international research to develop 84 recommendations that will guide best practice in Australia.
The recommendations help clinicians work with children and families to set therapy goals, select and deliver the most appropriate therapies to meet those goals, and then monitor the therapy to ensure the therapies are safe and effective.
The guideline was reviewed and approved by the National Health and Medical Research Council, indicating that it has been developed to the highest standards.
What does it mean for medical practitioners?
Providing therapies to autistic children can be complex, and involves the considerations of many factors. A therapy approach that may be appropriate for one autistic child, may be quite unsuitable for another.
Children can learn in different ways. For example, some children may receive benefit from learning to talk with the help of a technology device. Other children may not receive any benefit from this kind of support, and instead, the device could be an added and unnecessary complication in the family’s life.
There are similar considerations for a variety of other factors. These include where a therapy is delivered (in a clinic, in the home, or in the community), how it is delivered (individually or in a group), and through what means (in person or telepractice).
The guideline is particularly focused on therapies provided by allied health practitioners. For these professionals, it provides a step-by-step process that helps them consider these factors in a logical and systematic way. This will help these practitioners understand the unique factors of each child and their family, and to turn this knowledge into the most effective plan to support them.
However, the guideline also has great importance to medical practitioners. The step-by-step process that it outlines can also help structure the engagement that medical professionals have with autistic children and their families.
The guideline also provides very clear insight for medical practitioners into the clinical interactions that the children and families will be having with other professionals. Both of these factors can significantly improve the experience of kids and families with the medical system.
While the guideline is not mandatory, it has important implications for government systems such as the NDIS.
At a time when there is concern about how the NDIS can best support its participants, this guideline provides evidence-based guidance to support that endeavour. We are in ongoing dialogue with the NDIS about how the guideline can better support the NDIS system, and ensure that all children in Australia have access to safe, effective and desirable therapies.
ED: Professor Andrew Whitehouse is Bennett Chair of Autism at the Telethon Kids Institute and the University of WA.